Saturday, June 24, 2017

What do you do when the system fails you? You stand up for your families. Stand up for other families. And in this way change the world.



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.

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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.


A mother in North Bay says a ministry organization misplaced her autistic daughter's medical files, delaying an important treatment.
CBC.CA

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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.
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)
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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.”

Communication breakdown

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.

http://www.nugget.ca/2017/05/26/no-place-in-north-bay-for-severely-autistic-daughter

No place in North Bay for severely autistic daughter

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
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.”

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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.


https://www.facebook.com/michelle.jackettwebster
Michelle Jackett-Webster updated her profile picture.
3 hrs

And the place where our kids may end up is in these hospitals since government all over Canada has no plan.





Alexine Marier with Michelle Jackett-Webster.
10 hrs
WHAT HAS HANDS DONE FOR ROBYN AND HER FAMILY?
I’m not one to campaign on social media but my heart aches for a beautiful girl who taught me that love can be expressed in many ways and if you take the time, you can see that life has many beautiful interpretations.
My dear friend and mentor, Michelle Jackett-Webster has 3 beautiful and remarkable children. I was privileged and blessed to get a look into her world when I worked alongside her with her Can-Do kids Theatre program; an inclusive theatre company dedicated to individuals in North Bay and Area with autism and other special needs. Michelle, who is a big advocate for autism with two children of her own on the spectrum, taught me patience, love, acceptance, understanding, tolerance and the power of listening. I could never fully put into words the impact that she, her family and the can-do kids had on me but I do know I am eternally grateful for the better person it has made me. Yet, today my heart aches because one of the strongest woman I know is reaching out for help and no one is listening.
Her daughter Robyn has been suffering. She has been in crisis and is being tossed around from place to place without the consistent care she needs. We may not always understand Robyn’s perspectives on life, but that doesn’t mean that she should be left behind. You see, Robyn has severe autism, is non-verbal and has been refused care she and her family so desperately need. Well over a month ago, HANDS (The Family Help Network) dropped the ball. Read these stories to find out more:
http://northernontario.ctvnews.ca/north-bay-mom-fears-for-a…
http://www.nugget.ca/…/no-place-in-north-bay-for-severely-a…
http://www.cbc.ca/…/north-bay-family-autistic-teen-help-1.4…
My heart is broken for this family. Robyn was hospitalized when she hit crisis. She was residing with HANDS at the time and they would not take her back. For 3 weeks she was living in a hospital, sometimes in an induced coma to manage behaviours – that is no way for anyone to live. She went home and then HANDS only granted a 3 week service agreement on the condition that the family would not speak to the media anymore. Robyn stayed with HANDS and has now been sent back to the hospital as a strategic move to get her out of the residence. Rather than work collaboratively to transition Robyn, they have done nothing to come up with a solution since terminating her placement except send her to hospital. Hospitals can be traumatic for anyone, but for Robyn it can spell catastrophe by sending her back into crisis. Luckily, Community Living, with special permission from the ministry, has stepped in with a placement but this will take time.
Why can’t Robyn be home, you ask? Well, Robyn's autism can manifest itself in violent behavior. The family has 2 other children’s’ health, safety and lives to consider on top of Robyn’s health and safety. Michelle explained on her blog, @ateamdiary:
“As for max this has been an autism nightmare. His anxiety has never been higher which has caused him to act out at home and at school. He keeps asking if Robyn is dying or dead. We have done our best to shelter him from intense conversations about her situation, but if he even hears me use a word that starts with ‘R’ he will run to me asking if I am talking about Robyn and if she is in the hospital and if she is ok. Robyn and Max have a complicated relationship because he is so sensitive to noise and Robyn's meltdowns send him into hysterics. He has also witnessed her attacks on me and been the victim of her violence. But at the base level he understands that she is his sister and is obviously very concerned. While I have been filling staffing gaps, I have had virtually no time to attend to his ever growing needs. Tomorrow I had to cancel accompanying him on his end of year school trip because I have Robyn to care for. If we are able to get Robyn through this crisis I may very well have to deal with a crisis that has been building with Max. I love all of my kids equally but the reality of the situation is that Robyn's crisis has me trapped and helpless to be the mom I always promised I would be to Emma and Max. None of this is my fault and these circumstances are beyond my control but that does not help with the guilt and sadness I go to bed with every night. Autism is a family issue, we are strong here at the A-team but it has taken its toll.”
This breaks my heart. The way in which Robyn has been treated is unacceptable. If this could happen to Robyn, with all of Michelle Jackett-Webster’s advocacy efforts, it’s happening to other Canadian families too.
If anyone out there knows of a way to help this family, I plead with you to reach out. The a-team diary
#autism #austismspeaks #ateamdiary #standupforeveryone #IStandByRobyn

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Julie Ali In my experience advocating for a severely disabled sister in Alberta, government will do nothing until there is #MediaAttention and #SocialMediaChangesEverything. You simply have to go public and be willing to share your story and end your family privacy because otherwise the system fails you. It might still fail you with the publicity but at least you have made public documents that indicate to the public that there is no reason for this sort of system wide failure in provision of services and supports to families who have children with disabilities. What is going on here is derelict government performance. There has been enough information provided all over Canada about the problems families are having with the care of children with disabilities in the system. In the past families had extended family and community helps to get them through the work load. Now children with disabilities have more ability to live to an older age and yet we have seen no plan by government at all levels in terms of addressing the needs for housing and care. It's troubling but since government fails ,families have to make the plan for government. We have to do the work government refuses to do; instead of supporting families, government leaves the burden to families leading to burn out, stress for no reason and evictions that destabilize the handicapped person. All of these matters are avoidable. Government needs to get the work of providing supports, services and housing for citizens with disabilities initiated. These are human rights issues. Handicapped citizens have as much right to access to supports, services and housing as non-handicapped citizens.

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