Susan Peters has been seeking early intervention support services for her daughter Raven for more than a year now.
The 17-month-old girl lives with Cockayne Syndrome, a rare genetic disorder that prevents growth at a normal rate.
“Two to three children out of a million or so are born with it,” said Susan Peters, adding the disorder is terminal.
“We will be very lucky if she makes it to seven years,” Peters told Global News.
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The nearly one and a half year old girl is only the size of a six-month-old and has all kinds of developmental and physical challenges.
“It is a multi-system disorder,” Peters said. “It affects eyes and hearing and growth, and it’s also neurodegenerative.”
Raven doesn’t eat orally and requires a gastrostomy tube to be fed.
Raven and her family receive early intervention support services at Starbright Children’s Development, which has been providing services to children from birth until school-entry age for 57 years.
The non-profit organization is slated for closure as the province centralizes support services for children with the creation of pilot Family Connection Centres (FCC) in four B.C. communities including Kelowna.
For Peters and her family, the idea of transitioning to new services with new therapists and not knowing how those services will be delivered and how often is daunting.
“It means starting over as well and I don’t really like the idea of having to start over,” said Peters.
“The people that we already work with at Starbright are already well aware of our situation. They already have a connection with Raven. These other people may not, so it also adds to the stress.”
Peters is also questioning how the new pilot FCC will provide services to children from birth all the way to the age of 18.
“Somebody who works specifically with like an 18-year-old cannot really work with a child six and under,” Peters said.
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Betty Teigen is the head of the infant development program at Starbright working with children like Raven.
“The first part of the child’s life, that’s crucial and so important,” Teigen said.
She agreed with Peters’ concern about the FCC’s age range, adding there’s quite a bit of research on the importance of age-appropriate training.
“The Council for Exceptional Children has some standards that they advise for children with disabilities,” Teigen said. “They have issued several research articles that say that people need to have very specialized training in the age range they’re serving. So that would be birth to three, that would be three to five, five to eight and above.”
“So it’s my opinion that it’s very hard to have expertise in all of the areas up from zero to 18.”
The provincial government has awarded the $14 million per year contract to Arc Programs, a private company that will operate the FCC and sub-contract out services to other private companies and non-profit organizations.
Starbright’s contract was set to end on March 31 but the province has since decided to give it transitional funding until the end of June to give parents more time to move over to the centralized model.
“Children aren’t really a pilot project,” Peters said. “The services are already working. They have been working for the last 50 years. I don’t see the need to close Starbright.”
