Kelowna mom of girl with terminal condition upset over Starbright closure: ‘It means starting over’ – Okanagan | 24CA News

Susan Peters has been looking for early intervention assist providers for her daughter Raven for greater than a 12 months now.

The 17-month-old lady lives with Cockayne Syndrome, a uncommon genetic dysfunction that forestalls development at a standard price.

“Two to three children out of a million or so are born with it,” stated Susan Peters, including the dysfunction is terminal.

“We will be very lucky if she makes it to seven years,” Peters instructed Global News.

The almost one and a half 12 months previous lady is just the scale of a six-month-old and has all types of developmental and bodily challenges.

“It is a multi-system disorder,” Peters stated. “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 household obtain early intervention assist providers at Starbright Children’s Development, which has been offering providers to kids from beginning till school-entry age for 57 years.

The non-profit group is slated for closure because the province centralizes assist providers for youngsters with the creation of pilot Family Connection Centres (FCC) in 4 B.C. communities together with Kelowna.

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For Peters and her household, the thought of transitioning to new providers with new therapists and never figuring out how these providers will likely be delivered and the way usually is daunting.

“It means starting over as well and I don’t really like the idea of having to start over,” stated 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 can be questioning how the brand new pilot FCC will present providers to kids from beginning all the way in which 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 stated.

Betty Teigen is the top of the toddler growth program at Starbright working with kids like Raven.

“The first part of the child’s life, that’s crucial and so important,” Teigen stated.

She agreed with Peters’ concern in regards to the FCC’s age vary, including there’s fairly a little bit of analysis on the significance of age-appropriate coaching.

“The Council for Exceptional Children has some standards that they advise for children with disabilities,” Teigen stated. “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 authorities has awarded the $14 million per 12 months contract to Arc Programs, a non-public firm that can function the FCC and sub-contract out providers to different non-public corporations and non-profit organizations.

Starbright’s contract was set to finish on March 31 however the province has since determined to provide it transitional funding till the top of June to provide mother and father extra time to maneuver over to the centralized mannequin.

“Children aren’t really a pilot project,” Peters stated. “The services are already working. They have been working for the last 50 years. I don’t see the need to close Starbright.”

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