It is pathetic that families are stressed and burnt out because government at all levels has no plan with reference to complex care patients or really any citizen with disability. It's ridiculous. Why don't we have complex care facilities? I was told in Alberta that it's just not present. What the heck? We can get a first rate cardiac care hospital but we can't get a complex care facility to place our family members with complex care needs? The fact is government can do ANYTHING it wants to do. If we don't have a complex care facility then we damn well need to get one. Can't do it? If you have millions to give to big oil you have millions to give to citizens with disability. End of the story.
I go back in time to find out how this family has struggled to save their child:
I am following this story and this is one article from 2014. It indicates the problems faced by families who can't get help in an efficient or timely manner. Meanwhile they are stressed, over worked and without respite. It's troubling that these families have to go to #MediaAttention and #SocialMediaChangesEverything to get the job done. Why? I guess government is reactive rather than proactive.
Misplaced medical files delays autistic child's treatment
CBC News Posted: May 21, 2014 12:26 PM ET Last Updated: May 21, 2014 12:26 PM ET
North Bay's Michelle Webster says when she went to sign up her daughter for an intensive behaviour program, she was told Robyn's file wasn't in the system — including her diagnosis, psychological assessments, and genetic history. (Jesse Webster)
(Note: CBC does not endorse and is not responsible for the content of external links.)
A mother in North Bay says a ministry organization misplaced her autistic daughter's medical files, delaying an important treatment.
Michelle Webster thought her daughter's medical information was lost by the group providing her daughter's treatment. Three weeks later, Webster was told the information had simply been archived.
Webster said people are unaware of the difficulties families with autistic children have in obtaining services.
“Parents burn out from the system really easily. And this is one of the reasons why,” she said.
“It's because things that should be easy questions to ask and be answered, that agencies should know the answers to, are sometimes really difficult.”
Webster's 12-year-old daughter Robyn has severe autism and has limited verbal communication. Robyn was becoming violent and Webster needed immediate help.
She went to apply for an intensive behaviour program, offered locally through a provincially funded group called the Family Help Network — also known as Hands — but was told Robyn's file wasn't in the system. That file included Robyn's diagnosis, psychological assessments, and genetic history.
It was something they “definitely should have had because Robyn has been receiving services at Hands since she was two years old,” she said.
After three weeks of questions, Webster took to Facebook to voice her concerns.
That's when she was contacted by Jeffrey Hawkins, the group's executive director.
He told her the information she thought was lost had simply been archived.
“Clearly there was a communication breakdown by us. And that shouldn't have happened,’ Hawkins said.
Webster said she doesn't blame the organization, but is upset her daughter didn't get the treatment she desperately needed.
The executive director of the group said he's apologized for the mix-up and will ensure future employees know how to access the files.
And what will all this struggle get you?
I guess it will get you back to the beginning of the struggle.
No place in North Bay for severely autistic daughter
By JENNIFER HAMILTON-MCCHARLES, The Nugget
Friday, May 26, 2017 12:35:14 EDT AM
Robyn Webster, 15, remains at North Bay Regional Health Centre following a violent incident last week during which the teen harmed herself. Robyn's mother, Michelle, is upset Hands: The Family Help Network has terminated Robyn's spot from the family home she has been living in since January. Hands said it hopes to meet with the family this week to discuss possible options. Submitted photo
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Michelle Webster has reached a breaking point.
“The stress has put me over the edge. I'm broken. I'm done,” she said Thursday afternoon from the North Bay Regional Health Centre.
Webster has been fighting on behalf of her daughter, Robyn.
Robyn, 15, was admitted to the hospital just over two weeks ago after punching herself in the face until she was black and blue.
“She's hitting herself because she wants to tell you she's hurting,” Webster said.
“This was bad, but I can tell you it has been much worse. The bruising has been so bad, I didn't recognize her. She was black, blue, yellow, purple and green.”
Robyn is nonverbal autistic. She was diagnosed with autism at about 18 months and started to self-harm by the age of 11.
Robyn has inflicted countless bruises to her face, sustained a broken nose and caused blindness in one eye from the blunt force of her fists to her face.
In January, Robyn was moved into a family home operated by Hands: The Family Help Network that offers 24-hour care for children with complex needs.
Webster said the family spent a year contemplating the move and was assured staff were aware of Robyn's needs.
“She loves it there,” Webster said.
But a week ago Webster was notified her daughter's spot at the family home was being terminated because Robyn requires a greater degree of care.
Jeffrey Hawkins, executive director of Hands, said he intends to meet with family by the end of the week to review options for Robyn.
“The family needs to be part of the discussion,” he said Thursday. “There are options for Robyn. However, they're not local, they're not in the North Bay community.”
Hawkins said Hands is trying to find them as close as possible, but it looks like they are 90 minutes to two hours away.
“We're working with our community partners. Unfortunately, there is nothing in this area for Robyn.
“This is a very unique circumstance,” he said.
Webster said as of Thursday afternoon she still had no idea what that means or what options Robyn has left.
“They (Hands) assured us they were up for this challenge. They told us they could deal with Robyn and they wouldn't leave her,” she said. “We told them when we were discussing the idea of moving Robyn into (the family home) that if they couldn't handle her needs to let us know, because it would be more harmful to move her in and out of facilities.”
Robyn has been moved from the hospital's critical care unit to the paediatric ward. It's unknown how long she will remain in hospital.
“There's no place for her to go,” Webster said. “They have abandoned us. I just hope Hands is using this time to come up with a crisis response for Robyn.”
Webster said it's becoming more difficult to see her daughter in the hospital.
“She uses her iPad and eye movements. She looks at me and starts to cry and says 'car.'
“I know she wants to get out of the hospital. There's no reason for Robyn to be living in the hospital.”
Webster said the hospital has been the family's saving grace and a champion for the family.
She said she's been assured Robyn will not be discharged with no place to go.
“I would have preferred to be working with Hands, but they're not picking up the telephone,” Webster said. “They're not talking to us.”
Well I guess it will get you to a hospital which is where citizens with complex care needs are being inappropriately housed and serviced. Why? Well because the system is in chaos and doesn't have any intelligence built into it despite many intelligent folks working in the system.
No matter how the system fails our kids, we can't fail them. Stand up for your families folks.
And the place where our kids may end up is in these hospitals since government all over Canada has no plan.