Parents of children with complex health needs say they are ‘slipping through the cracks’

Tammy Embrey from Port Colborne is struggling to get her special needs daughter paediatric care since she turned 18 in April.

Embrey is part of a bigger group of parents who say they’re frustrated with the healthcare system because kids with complex health conditions fall through the cracks.

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Embrey’s daughter Kiesha is currently admitted at Juravinski hospital. She says her daughter is 18 but physically looks like she’s six years old. Kiesha has a number of disabilities so she needs complex care.

Up until April, Kiesha was getting paediatric care from McMaster Children’s hospital but when she turned 18 she technically aged out. Embrey said they could no longer treat her. Since then Kiesha was taken to other hospitals but hasn’t been able to get proper treatment anywhere.

“She wasn’t able to be seen by the paed’s doctor because of her age so she had to be seen by the adult doctors but then we saw three doctors there and because of her size and her complexity, they said they weren’t able to look after her well enough,” Embrey said.

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Embrey filled out special request forms to get McMaster Children’s hospital to keep her for a few extra years, but she hasn’t heard back. She says a number of doctors who’ve treated Kiesha also wrote a letter to the hospital about her needs.

CHCH News reached out to Hamilton Health Sciences (HHS) Monday afternoon, and they tell us they are unable to share information on this case, due to privacy concerns.

Embrey says she’s not upset with the doctors or the hospital because she says they’ve been doing their best to help her daughter and she understands that their hands are tied but she’s just frustrated and worried that her daughter might not receive the care she needs.

“The adult world is not equipped for our special needs kids, the medication. They do a standard adult dose where with my daughter giving her those adult doses if not checked correctly can overdose her,” Embrey said.

Embrey is not alone Shawna Cassidy has a son with cerebral palsy who is also over 18. “I’ve been in healthcare for 20 plus years and I really feel like a lot of our kids are slipping through the cracks if my son was to be admitted to hospital at this point he’d be sent there and I wouldn’t be able to stay and I take care of all of his daily needs for him.”

They say the healthcare system needs to be improved to provide more support for special needs kids who become adult patients.

CHCH News reached out to the Ministry of Health but they didn’t provide a statement or comment instead in a response they said hospitals are independent corporations responsible for their own operations and services.

CHCH News did ask HHS about its policy on children who become adult patients and have yet to hear back.

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