Saturday, June 24, 2017

---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.--------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.-------The a-team diary 2 hrs · Robyn woke up today in another unfamiliar environment. The staff at nbrh has moved heaven and earth to make her comfortable. Community living has provided incredible staffing and clinical support. Hands officially wipes their " hands" of Robyn tomorrow at 9 am. We have been summoned to silence about speaking out against negativily about. handsthefamilyhelpnetwork as a condition of the temporary service agreement they granted after sick kids. We were even told in that agreement that in the event the media should contact we were to reply that " hands is working on a resolution for our daughter". But as of now that agreement is null and void as they have refused an extension and sent her to the hospital. Please understand that we speak the truth. If they perceive that to be negative that is beyond my control. The fact of the matter is that the series of events that have transpired could have been handled in a another more professional manner that would have been less traumatic for Robyn and our family. Gratefully community partners have come to the rescue ( clnb and nbrhc) to take charge of the absence of transition planning and leadership that the executive director of hands refused to engage in. Northern Ontario this is the agency that governs autism services and mental health support for almost 9000 people in the north. I demand accountability from the ministry to ensure that these poor ethics in service practices don't put other families like mine under unnecessary trauma.

It is troubling that the government at all levels in Canada is not responding to the needs of families who have children with autism. The lack of integrated care for complex needs children, youth and adults is puzzling since such care is essential to maintain their health. The lack of integrated care and housing does not vanish as a kid with autism becomes an adult and government is required to meet the needs of all citizens with disabilities. These are human rights issues.

I have been following this case that mimics the eviction of my handicapped sister from the continuing care system into a hospital. http:/...
READINGCHILDRENSBOOKS.BLOGSPOT.COM

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It is clear to me that the government of Alberta and other provincial governments have no strategy in place to handle the care of severely handicapped citizens. The failures have been present for a long time. In Alberta we have been witness to the deaths of parents who were unable to care for autistic children as in the case of Jeffrey Bostick's murder. The judge made no recommendations in this fatality inquiry. If the parents of children with autism were allowed to make recommendations I'm betting there would be a ton of deficiencies in the system that would be present in this report.
What is going on is the dereliction of duty of government and the powerlessness of individual families to bring about system wide change. In the case of Jeffrey Bostick  and Jeremy Bostick it was too late. But in the case of other kids it is not too late. We need to speak in one voice to government at all levels. The care of disabled children, youth and adults is an area of shame. We can do better. And we will do better.
Results from the fatality inquiry surrounding the deaths of Jeffrey Bostick and his 11-year-old son Jeremy were released Friday, and the judge overseeing the inquiry included no recommendations to prevent any other similar cases from turning to tragedy.
Jeffrey, 39, and Jeremy were found dead in the basement of their family home on September 27, 2009, the Medical Examiner found they had both died from Carbon Monoxide, and police determined it was a murder-suicide.
When the inquiry first began, Jeffrey Bostick’s common-law wife Deena Caputo testified the couple was under financial stress and in the days leading up to the deaths, they were in a battle with the provincial government over where Jeremy should be living.
PHOTOS
Court generic
Caputo said a disjointed system made it difficult for the family to access proper services for Jeremy’s care – the young boy had been diagnosed with autism.

I have been following this case that mimics the eviction of my handicapped sister from the continuing care system into a hospital. http:/...
READINGCHILDRENSBOOKS.BLOGSPOT.COM



I have been following this case that mimics the eviction of my handicapped sister from the continuing care system into a hospital.

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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It's troubling that government in Canada has not mastered the care of complex cases. It's troubling that families are in turmoil and that there are no leaders for change.
Maybe mummies are the leaders?

In any case, children with severe disabilities get older. There aren't many group homes that can handle adults with complex care needs. As such they may enter placements such as in the continuing care system which is also inappropriate for their needs since most of the folks in these institutions are older. The special needs of these handicapped adults are not being addressed in the continuing care system where folks do not have the training, the integrated care teams or the supports from the system that are needed. It's a major problem that Canada and its leaders at all levels need to address.
But where are these leaders?

I guess they're the mummies.



https://www.facebook.com/michelle.jackettwebster

The a-team diary
2 hrs
Robyn woke up today in another unfamiliar environment. The staff at nbrh has moved heaven and earth to make her comfortable. Community living has provided incredible staffing and clinical support. Hands officially wipes their " hands" of Robyn tomorrow at 9 am. We have been summoned to silence about speaking out against negativily about. handsthefamilyhelpnetwork as a condition of the temporary service agreement they granted after sick kids. We were even told in that agreement that in the event the media should contact we were to reply that " hands is working on a resolution for our daughter". But as of now that agreement is null and void as they have refused an extension and sent her to the hospital. Please understand that we speak the truth. If they perceive that to be negative that is beyond my control. The fact of the matter is that the series of events that have transpired could have been handled in a another more professional manner that would have been less traumatic for Robyn and our family. Gratefully community partners have come to the rescue ( clnb and nbrhc) to take charge of the absence of transition planning and leadership that the executive director of hands refused to engage in. Northern Ontario this is the agency that governs autism services and mental health support for almost 9000 people in the north. I demand accountability from the ministry to ensure that these poor ethics in service practices don't put other families like mine under unnecessary trauma.

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Julie Ali Usually when facilities don't want to provide the integrated care plans for folks in the continuing care system they discharge to hospitals and tell the system they are refusing a return from the hospital. The GOA (government of Alberta) is complicit in this business of getting rid of residents in this way and having them in hospital because they basically have no control over the private sector businesses. It's the way the system has been set up. The folks who suffer are the most vulnerable citizens who cannot advocate for themselves. This junk is acceptable to government because it simply has abdicated care to these organizations and families. We're the ones who have the responsibility when the government simply doesn't want to do anything for the most vulnerable. I can't see this changing until families become public about these system wide failures. Although everyone is against institution care for good reasons the fact is that complex care facilities are essential for some cases. Families are burnt out. And there is no respite care for some families in Alberta who have some help while they work but when they are off work are expected to be the caregivers without any time for themselves.

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Frankly I find it puzzling that the judge in this case had NO recommendations to offer the system. Surely there could have been a few?
How about having an integrated care team in charge of the care of complex care cases? How about providing an institution such as Michener Centre for cases that cannot be placed anywhere else? How about providing respite care as well as counselling to stressed and burdened parents? Where were the resources for this family? These were preventable deaths and the system failed. Big time.
http://edmonton.ctvnews.ca/fatality-inquiry-into-2009-death…


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http://edmonton.ctvnews.ca/fatality-inquiry-into-2009-death-of-father-and-son-concludes-with-no-recommendations-1.1556861




Fatality inquiry into 2009 death of father and son concludes with no recommendations


CTV Edmonton: Fatality inquiry into death
A judge has ruled little can be done to prevent such tragedies as the death of a father and his severely autistic son.




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Julia Parrish, CTV Edmonton
Published Friday, November 22, 2013 7:07PM MST 
Results from the fatality inquiry surrounding the deaths of Jeffrey Bostick and his 11-year-old son  Jeremy were released Friday, and the judge overseeing the inquiry included no recommendations to prevent any other similar cases from turning to tragedy.
Jeffrey, 39, and Jeremy were found dead in the basement of their family home on September 27, 2009, the Medical Examiner found they had both died from Carbon Monoxide, and police determined it was a murder-suicide.
When the inquiry first began, Jeffrey Bostick’s common-law wife Deena Caputo testified the couple was under financial stress and in the days leading up to the deaths, they were in a battle with the provincial government over where Jeremy should be living.
Caputo said a disjointed system made it difficult for the family to access proper services for Jeremy’s care – the young boy had been diagnosed with autism.
However, Justice Shelagh Creagh stated in her decision that she couldn’t conclude whether those specific stresses contributed to the two deaths.
“I would be remiss if I did not mention that the evidence leaves no doubt that throughout his life Jeremy was cared for and supported by remarkable caregivers,” Justice Creagh said in her written decision.
“No one will ever know why Mr. Bostick chose to do what one counsel described as the ‘unthinkable’ to murder his child and take his own life. All that can be said is that in September of 2009 Mr. Bostick was under a number of pressures. What role they played in his decision is speculative.”
Edmonton – Mill Woods – Beaumont MP Mike Lake, whose son also has autism, said such a case indicates improvements need to be made.
“As a parent of a child with autism I know that it can be hard,” Lake said.
“Every jurisdiction can do better,” Lake continued, saying governments need to work with support groups to come up with solutions to help families dealing with autism.
CTV News spoke with Caputo Friday, while she did not wish to be interviewed, she provided a statement that read, in part: “I feel the circumstances surrounding this event are still very profound and painful for myself and my son.”
With files from Ashley Molnar








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