Roy Schatz and Sandra Kahle fear their daughter Emily, who has Down Syndrome, will suffer setbacks if Starbright is forced to close.

Image Credit: Submitted/Selina Kozub

There’s an old adage: “If it ain’t broke, don’t fix it.”

Parents with children at Kelowna’s Starbright Child Development Centre are wondering why the provincial government is set on breaking their hearts.

The government is pulling funding from Starbright after 57 years and giving it to ARC Programs Ltd. as part of a pilot project to provide services to all children with developmental difficulties, not just the preschool children that Starbright serves.

“Why do we want to change a system that was community-built in Kelowna because the community felt a need for this centre for childhood development and has created it?” Roy Schatz asked. “That’s something that scares us as parents, when we don’t really see a need for change, when we already have a system that is, sort of, what they are trying to achieve with this new group.”

Schatz and Sandra Kahle have been using Starbright’s services for almost three years, dating back to before their daughter, Emily, was born with Down Syndrome.

“We knew there was going to be ongoing needs,” Schatz told iNFOnews.ca. “We heard a little bit about early childhood development and early intervention but we didn’t really know who we could talk to. So, when we found out about Starbright, that was our first go-to place.”

They consulted Starbright before Emily’s birth, which was complicated and resulted in about five months of hospitalization – most of it at B.C. Children’s Hospital in Vancouver. Emily had a heart defect that required two open heart surgeries and she had two cardiac arrests before she was five months old.

“It has traumatized my wife quite a bit,” Schatz said. “There was a lot of worrying going on and this is just adding stress. We want to do what is best for our child. She’s doing so much better now that she’s receiving this childhood intervention through Starbright. We don’t want to lose that, not even for a month. Even a week of development is important for her.”

Starbright takes a team approach and provides all its services in one location.They get together with Emily and her parents to work out what’s best for her and what next steps need to be taken to aid her development.

From what Emily's parents understand about how things will be done through ARC’s new Family Connection Centre, different services will be provided at different locations in Kelowna.

That’s not the way ARC explains their process.

“It will be an interdisciplinary service and everything will be on site at the Family Connection Centre once it’s open and operational at the Capri mall site,” Candice Henriques, ARC’s executive director told iNFOnews.ca in an emailed statement. “Yes, there are a network of centres so there are many centres from Peachland to Oyama for different services but all services will be onsite at the Family Connection Centre so it’s individualized.”

The new facility is expected to open in March for families transitioning from the current system with new referrals being taken in April or May, Henriques said.

ARC will also offer in-home services, video conferencing at the centre as well as being in the community and in schools.

A background document she provided to iNFOnews.ca explains that ARC has been providing community social services in Kelowna since 1989.

Under the new model it will work with partners such as BGC Okanagan (formerly Boys and Girls Club), YMCA, Meridian Rehabilitation Services and Kids Physio Group “providing a wide range of therapies and support services for children and youth, aged 0-18, with neurodiversity, disabilities and complex needs and their families.”

READ MORE: Kelowna child development centre fighting closure by provincial government

While Emily’s parents fear setbacks in her development if the change to ARC happens, she’s a very social little girl so they don’t expect her to have problems adjusting to new people or new locations.

That’s not going to be the case with lots of other children at Starbright, especially those on the autism spectrum.

“People who are autistic, quite often with a change, there can be a meltdown,” Kahle, whose sister is autistic, said. “You might get to the appointment and the kid goes: 'That’s not the right place!' and has a complete meltdown and refuses to go into the location. Change is very very hard for a lot of the kiddos.”

The other concern the parents have is that there simply aren’t enough therapists in the various specialties to fill the needs of a 0-18-year-old service.

They're already looking to hire an occupational therapist privately but can only get on a waiting list. Plus, it’s very expensive since the therapists charge about $175 an hour, with no government subsidies. Parents can spend, easily, $1,000 or more per month for therapists.

“A lot of families with developmentally delayed children, they can’t actually both work,” Kahle said. “I used to work. I can’t work anymore. I need to stay home to make sure there’s somebody here with Emily at all times. At 28 months, she’s just started crawling. She’s not walking. She doesn’t talk, other than some random words.”

“Both ourselves and our partners have very experienced practitioners already that will transfer to the Family Connection Centre over the next two months to serve clients transitioning from existing services,” Henriques said via email. “We are in the midst of the recruitment campaign for more staff with specific expertise to bring on to meet the volume of transitioning clients and new referrals over the next few months.”

The Family Connection Centre in Kelowna is one of four pilot projects in B.C.

The other three contracts — in Terrace, Haida Gwaii/Prince Rupert and the Bulkley Valley/Stikine — were all awarded to existing child development societies. Only Kelowna’s has gone to a private company.

“Why not keep 0 to 5-year-olds that are getting these childhood development programs at Starbright and, if you want to open up services to a greater audience, that is great,” Schatz said. “But it does not mean you have to exclude Starbright. You can get Starbright integrated (into ARC). You have to subcontract a lot of these services. Why not use Starbright, continue to do this for the 0 to five-year-olds and focus the older kids?”

Schatz and Kahle will be joining other parents at Starbright (1546 Bernard Ave.) for a rally to support the centre at 10:30 a.m. Saturday, Feb. 4.

Starbright’s executive director Rhonda Nelson says 1,000 children use Starbright’s services each year.

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