A father says his family’s goals of helping their youngest child walk, talk and eat turned into a full-time job navigating British Columbia’s complex patchwork of supports for children and youth with disabilities.
Zev Tiefenbach said his six-year-old son has Down syndrome and Lennox-Gastaut syndrome, a challenging form of epilepsy.
Getting the help and treatment he requires has not been easy, especially since the family lives in the Shuswap city of Salmon Arm.
The B.C. government’s introduction Wednesday of a new system to provide supports and services for children and youth with disabilities through a one-stop local connection without people having to wait for a diagnosis or referral is a needed change, he said.
“We weren’t able to receive services to help us reach those goals in our community,” Tiefenbach said at a virtual news conference.
He said the family had to travel to Vancouver to receive services, which was disruptive for the family with three older children. The frequent travel also became a time to juggle various appointments, he said.
“We also struggled because the services were so fragmented that me and my wife ended up being effectively the case managers for a very, very complex kid with very, very complex needs,” Tiefenbach said.
Mitzi Dean, B.C.’s minister of children and family development, said the province’s current system is a patchwork of programs where many children and youth must wait for a diagnosis before receiving supports.
The new program will be modelled as a family connection hub at one location that offers supports and services to children and youth from birth to 19 years old based on individual needs regardless of having a referral or diagnosis, she said.
It will be the first time families will have access to mental health, behaviour and family supports all under the same roof, Dean said.
“We’ve known for many years that B.C.’s patchwork of programs hasn’t been working for families,” she said.
“Too many children and youth in our province can’t access services because it’s simply not available in their area.”
Too many children have been waiting for a diagnosis before getting help, said Dean.
“Too many children and their families have to scramble to piece together the kinds of supports they need to reach their goals,” she said.
The Children’s Ministry says the program will not be fully implemented across B.C. until 2025, but the first hubs will open in 2023 in the northwest and Central Okanagan.
Jennifer Charlesworth, B.C.’s representative for children and youth, said the move to a broad-based system of support that is not diagnostically driven and includes close-to-home service hubs will be welcomed by families, but the changes are several years away.
“The challenge I have is every day we are dealing with advocacy cases and reports and reviews that we’re doing for families that are really struggling right now. And the pandemic has just been so destructive for these families,” she said. “So, it’s a long time in the future.”
Tiefenbach said the program will provide necessary services for his family.
“We want the best for our son and our hope is this is a shift of paradigm where these critical services are part of the … social fabric,” he said.
The ministry says about 30,000 children and youth with support needs access services provided by the government and contractors.