When Amie Hough found out about Kelowna, B.C., becoming one of the four communities chosen for a pilot family connections centre, she said she was blindsided.
“My first reaction was shock and surprise,” said the concerned mom of a teen with Down syndrome.
“Because of the lack of communication, the lack of local consultation, lack of transparency, this feels a bit political and it feels like our kids in our community are a pawn in a bigger political game.”
Her 13-year-old son Oliver has been receiving speech and occupational therapies since he was born.
The province is trying a new way of delivering those services to children like Oliver and that has Hough, who is also the parent coordinator of the Kelowna Down Syndrome Community group, very concerned.
“I think we’re kind of experimenting with our most vulnerable population, and that’s children with disabilities and it just doesn’t feel right to me,” Hough told Global News.
The government is centralizing support services by creating ‘pilot family connections centres’, where children up to the age of 18 can access services regardless of whether they have a formal diagnosis or not.
“I think the hub model may benefit some families who have never had access to funding because they don’t have a formal diagnosis…that is however going to really open the doors to serve a lot of people. So how, how is this little bit of funding going to be spread across this huge population?” Hough said.
“The concern is for all families, will that dilute services? Will I get less options, less amount of services that I’m currently getting? There’s just so many unknowns right now.”
Hough is the parent coordinator of the Kelowna Down Syndrome Community group. She says many parents of children with Down syndrome are nervous about the new model.
“In a therapeutic environment, relationships are everything and it takes a long time to establish that,” Hough said. ” Children with intellectual disabilities struggle with change. They struggle with social connections.”
In an email to Global News, the Ministry of Children and Family Development stated, “pilot family connections centres represent an increase in provincial funding and resources for children and youth with support needs, including families of children with Down syndrome.”
The email went on to say, “this means children and youth with support needs, including Down syndrome, will be able to access to additional supports through family connections centres, some of which they may not currently have access to at all. ”
The centralized system was going to include children living with Autism, too, but after an uproar by B.C. parents, the government scrapped those plans, keeping the status quo of individualized funding.
“I stand by the Autism community, it just sort of baffles me that we are we are sort of segregating the disability population and saying that these children deserve the individualized funding that works for them. So we’re going to keep that…these children (with Down syndrome), they don’t get that option.” Hough said.
Parents of children with Down syndrome have long been fighting for the same individualized funding that families with children on the Autism spectrum receive.
They now fear a centralized system may quash any hope of that.
“I worry that our fight on a provincial and local level is going to be a bit dismissed or forgotten about, Hough said.
The new family connections centre will be operated by ARC Programs, which was awarded the contract by the provincial government.
ARC is a private company that will subcontract services to other private companies and non-profit organizations.
The centre will be located inside the Capri Centre Mall.
The new centre will replace the services currently provided by Starbright Children’s Development Centre.
The non-profit organization has been providing services to children from birth until school entry age in the Central Okanagan for the past 57 years.
It is slated for closure as a result of the government centralizing services but a closing date has not yet been announced.