In the past couple weeks, the Senate released its report on the status of the Disability Tax Credit and Registered Disability Savings Plan and its recommendations on how to make it better. https://sencanada.ca/content/sen/committee/421/SOCI/Reports/2018-06-18_SS5_RDSP-DTC_FINAL_WEB_e.pdf This report was received by the Minister of National Revenue Diane Lebouthillier. I personally received a letter this week stating the Minister had reviewed my daughter's file and reversed the decision made by the Canada Revenue Agency.
The following is the reply I sent to her and the members of the Senate who created the report.
July 10, 2018
Dear Minister Lebouthillier,
I would like to thank you for taking the time to review my daughter Skylar More's appeal for the reconsideration of the decision made regarding her Disability Tax Credit. As you read, her diagnosis of Fetal Alcohol Spectrum Disorder markedly restricts her ability to set goals, make judgments, problem-solve, use adaptive functioning and working memory 100% of the time. We fully recognize that she will live an interdependent life with us and others for the rest of her life. To know that we now have the means to provide for her after we pass away alleviates a great concern for us and we thank you for that.
We did read with great interest the Senate report that was released a couple weeks ago regarding the CRA's handling of DTC applications. We also appreciated the time and effort the committee took to understand where the issues are and believe the recommendations they made would certainly have a positive impact on this process going forward.
Your announcement of the establishment of an Advisory Committee going forward is what caught my attention and in part why I am writing to you today. Health Canada recognizes FASD as a permanent neurological disability which always markedly restricts goal setting, judgment making, problem-solving, adaptive function and working memory 100% of the time and will for the entire lifetime. It is now the second most prevalent neurological disability amongst our Canadian population behind only dementia/Alzheimer's with over 1 million individuals living with this disability and twice as common as Autism. I would encourage you to include a FASD neuropsychologist on your advisory committee as it is a very complex disability which requires four different specialists working in collaboration.
I do appreciate you taking the time to review my daughter's application and reversing the determination. We were not looking forward to having to go to tax court as that would have been a highly stressful situation for my daughter. We do hope you will reached the same conclusion when you review my son Jacob's application and my daughter Cassie who needs to submit for consideration again next year since her three years will be up.
One item we would ask going forward is regarding the frequency of reapplication regarding our children. While we appreciate your decision to give us five years before having to reapply for my daughter, FASD is a permanent lifetime disability with no cure. We also know that Tax Court has established case history stating the same fact and has ruled that no reapplication is necessary when the diagnosis is FASD. Canada Health states the same fact and the Ontario Disability Support Program agrees as well. We would ask going forward that our three children, Skylar, Cassie and Jacob More, all of whom have been diagnosed with FASD would receive a lifetime exemption to reapplication for the Disability Tax Credit.
I look forward to your reply.
Rob More
robmore629@gmail.com
cc:
art.eggleton@sen.parl.gc.ca
Chantal.Petitclerc@sen.parl.gc.ca
judith.seidman@sen.parl.gc.ca
jim.munson@sen.parl.gc.ca
WandaThomas.Bernard@sen.parl.gc.ca
fabian.manning@sen.parl.gc.ca
marie-francoise.megie@sen.parl.gc.ca
Ratna.Omidvar@sen.parl.gc.ca
rosemay.poirier@sen.parl.gc.ca
kamal.khera@parl.gc.ca
Pat.Kelly@parl.gc.ca
Pierre-Luc.Dusseault@parl.gc.ca
Xavier.Barsalou-Duval@parl.gc.ca
lisa.raitt.a1@parl.gc.ca
scott.reid.a4@parl.gc.ca
al@impact6.ca
Diane.Lebouthillier@parl.gc.ca
House of CommonsOttawa, OntarioCanadaK1A 0A6If you wish the mail your letter, you don't need postage.
Thursday, 12 July 2018
Saturday, 30 June 2018
The Role of a Voice
Happy Canada Day, eh!
I had the pleasure of taking a tour of one of my student's new school with his parents this week which reminded me of just how important a role we have as voices. English is their second language and they are learning about our Canadian school system. It was my principal who reminded me that this child is one who could easily get lost in the system. He is a quiet, shy young man with a great heart and a quick smile. He struggles, though, with understanding who makes a good friend and who doesn't make a good friend. His new school and I have had several conversations to date but his direct supervisors had only met him once three months ago and had never met his family. He had his IPRC meeting, he has an IEP, he has a five-step transition plan, he has an EA allotment profile, and it took the face to face meeting interacting with the direct supervisors for 15 minutes before a truly successful plan was created. I feel so much better now in terms of what next year is going to look like for him. He will be fine.
I had the pleasure of taking a tour of one of my student's new school with his parents this week which reminded me of just how important a role we have as voices. English is their second language and they are learning about our Canadian school system. It was my principal who reminded me that this child is one who could easily get lost in the system. He is a quiet, shy young man with a great heart and a quick smile. He struggles, though, with understanding who makes a good friend and who doesn't make a good friend. His new school and I have had several conversations to date but his direct supervisors had only met him once three months ago and had never met his family. He had his IPRC meeting, he has an IEP, he has a five-step transition plan, he has an EA allotment profile, and it took the face to face meeting interacting with the direct supervisors for 15 minutes before a truly successful plan was created. I feel so much better now in terms of what next year is going to look like for him. He will be fine.
It is amazing, though, what the face to face conversation
does. When I think about when our truly effective advocacy happens, the
direct conversation is always the best. You know what I am talking
about. So many of you are fabulous at banging on people's doors and
refusing to go away. It is absolutely a skill being able to walk into
intimidating places and meet with strangers. Articulating a need in a way
people can understand is a challenge onto itself as well. It is why we
surround ourselves with quality people who can support us in these different
environments. My eldest daughter graduated from high school a couple nights ago to great
fanfare. While we have no idea what September is going to look like for
her yet, there was one key point from last night we are holding tight.
She won the award for the most volunteer hours with 184 hours. That award
represents her ability to put others first, being willing to serve, her courage
to speak and work with different people in different environments, her belief
that she has something valuable to contribute, and her strong sense of
community. She has most certainly found her voice.
What happens, though, if someone doesn't have a voice. One
of my passions is to tell the stories of our WWI veterans. Lance Corporal
Cecil Smith is a great example of what happens when someone doesn't have a
voice. Lance Corporal Smith was a 17-year-old man who sailed to Halifax
from England after all his relatives passed away. He later died in WWI and all his papers and
medals went into Archives. However, a
Beckwith Township farmer, who Cecil helped for three months, convinced his
local municipality to add Cecil’s name to their cenotaph. Through that farmer’s voice, a hundred years later, Cecil’s
sacrifice has not been forgotten.
It can be frustrating trying to be that voice, though. We remind
others constantly, review frequently, teach repeatedly, and occasionally find
success. I personally am excited about yesterday’s cabinet announcement
and particularly one thing. Doug Ford
has created a new ministry called Ministry of Children, Community and Social
Services and appointed Lisa MacLeod as Minister. I am excited because what he has done is
combined children and adults together under this portfolio. We are no longer dealing with one ministry
for children and another ministry for adults.
For us, this hopefully will eliminate that huge transition we experience
when our children living with FASD become adults. And Lisa MacLeod, champion of Rowan’s Law and
the Acquired Brain Injury group is in charge.
I believe we will find a receptive audience in Minister MacLeod. For me, that is a success. While it would be nice to have things move
faster, ask yourself this. Are we in better shape today than on June 30,
2017? Or June 30, 2013? While we haven’t hit the homerun yet, single
after single will get us there as well.
Remember, the only way we lose is if we quit. As long as children living with FASD need a
voice, we will not quit.
Saturday, 9 June 2018
Sleep and FASD
One of the big issues that gets discussed a lot on the FASD Facebook forums is sleep and the lack of it. If you are one of the lucky people with a child living with FASD who sleeps well, count your blessings. Our middle daughter always falls asleep within five minutes of the head hitting the pillow, can sleep through anything and always wakes up ready to go. She is also the one who has very few self-regulation and mental health challenges.
However, our youngest has really large sleep issues. It is always 60-90 minutes to transition into bed, and 60-90 minutes to get going in morning. We have been doing all the regular things to encourage sleep and have been meeting with medical professionals. We received some information that was new to us and thought it might be helpful for you.
We know routine is important but it needs to be a routine that works for everyone. If we have to make a choice between routine and escalation or being willing to adapt, we adapt. We used to try a 8pm then 9pm bedtime but we were finding my son would just play and toss and turn until 10pm at the earliest and lots of time 11pm. We made the decision we would rather have him be physically active until 9pm and make himself more tired. We make sure there are no electronics including TV the hour before he goes to bed. We do the Melatonin every night and give him Vitamin D in the morning. His room and bed is a cave with blankets and curtains blocking out light, window open to cool the room, a blue LED light instead of a regular nightlight, and one of the better investments was the $35 white noise machine from Amazon. It has been one of the few things that has made a difference. We did stop Melatonin because our pediatrician said melatonin does have the opposite effect on 2% of people and will keep them awake.
We always follow the routine of get our snack, gather up our stuff and go to our room, make our bed, do our bathroom routine, get into bed, cuddle with Mom and give a hug to Dad. We did use Mom's Fitbit for a few nights to get a sense of the type of sleep he is getting. We saw from the Fitbit he was likely not getting any REM sleep because he was moving every 20 minutes or so.
So we got a referral from his pediatrician to a fellow pediatrician with an interest in sleep. It was very nice in that she was aware of how FASD can impact sleep and commented on the fact we are doing everything she would want parents to be doing. She also mentioned she agreed adapting instead of escalating is an excellent choice in her opinion. Finally, she also went on to say she really doesn't like using medication which is fabulous as the thought of adding another medication to the current cocktail is a little intimidating.
She shared with us that no one sleeps for much more than 90 minutes before stirring due to our survival instinct. She was also intrigued with the Fitbit data but she won't use the data because Fitbit won't share the algorithm they use to determine sleep patterns. Sleep specialists don't know if the Fitbit algorithm is based on research or not which is why they have a similar device called an actigraphy which is also worn at home. She thought our son may have restless leg syndrome so she made the following recommendations. She said consider a weighted blanket because of his sensory needs, and take additional iron without consuming dairy or citrus before going to bed. She said if you have an elevated iron level, that can help increase sleep. Finally, if these things don't work, then we would look at a medication called gabapentin. She also said it could be sleep apnea but there is no treatment for sleep apnea other than the head gear which our son would never use due to his sensory needs.
While we don't have any great solutions yet, it is encouraging to know once again we are working with a team that gets it. Sleep is such an important part of our health and yet there are so few doctors, treatments and research articles. It has been connected with mental health, anxiety, intelligence, heart conditions and other aspects of our lives. And frankly, as a caregiver for children impacted with FASD, sleep is vital for all aspects of our entire family.
On another note, at the last SEAC meeting for the Catholic District School Board of Eastern Ontario, Superintendent Dr. Hawes announced they elected to use the additional Ministry money to hire an Occupational Therapist to focus on sensory needs, a lead Psychologist, a Behavioural Psychologist, and a Speech-Language Pathologist to create a multidisciplinary team to support all students. It is so inspiring to me that this school board took action to support its students in such an unique way. Once again, I am so proud of our school board in making this happen.
However, our youngest has really large sleep issues. It is always 60-90 minutes to transition into bed, and 60-90 minutes to get going in morning. We have been doing all the regular things to encourage sleep and have been meeting with medical professionals. We received some information that was new to us and thought it might be helpful for you.
We know routine is important but it needs to be a routine that works for everyone. If we have to make a choice between routine and escalation or being willing to adapt, we adapt. We used to try a 8pm then 9pm bedtime but we were finding my son would just play and toss and turn until 10pm at the earliest and lots of time 11pm. We made the decision we would rather have him be physically active until 9pm and make himself more tired. We make sure there are no electronics including TV the hour before he goes to bed. We do the Melatonin every night and give him Vitamin D in the morning. His room and bed is a cave with blankets and curtains blocking out light, window open to cool the room, a blue LED light instead of a regular nightlight, and one of the better investments was the $35 white noise machine from Amazon. It has been one of the few things that has made a difference. We did stop Melatonin because our pediatrician said melatonin does have the opposite effect on 2% of people and will keep them awake.
We always follow the routine of get our snack, gather up our stuff and go to our room, make our bed, do our bathroom routine, get into bed, cuddle with Mom and give a hug to Dad. We did use Mom's Fitbit for a few nights to get a sense of the type of sleep he is getting. We saw from the Fitbit he was likely not getting any REM sleep because he was moving every 20 minutes or so.
So we got a referral from his pediatrician to a fellow pediatrician with an interest in sleep. It was very nice in that she was aware of how FASD can impact sleep and commented on the fact we are doing everything she would want parents to be doing. She also mentioned she agreed adapting instead of escalating is an excellent choice in her opinion. Finally, she also went on to say she really doesn't like using medication which is fabulous as the thought of adding another medication to the current cocktail is a little intimidating.
She shared with us that no one sleeps for much more than 90 minutes before stirring due to our survival instinct. She was also intrigued with the Fitbit data but she won't use the data because Fitbit won't share the algorithm they use to determine sleep patterns. Sleep specialists don't know if the Fitbit algorithm is based on research or not which is why they have a similar device called an actigraphy which is also worn at home. She thought our son may have restless leg syndrome so she made the following recommendations. She said consider a weighted blanket because of his sensory needs, and take additional iron without consuming dairy or citrus before going to bed. She said if you have an elevated iron level, that can help increase sleep. Finally, if these things don't work, then we would look at a medication called gabapentin. She also said it could be sleep apnea but there is no treatment for sleep apnea other than the head gear which our son would never use due to his sensory needs.
While we don't have any great solutions yet, it is encouraging to know once again we are working with a team that gets it. Sleep is such an important part of our health and yet there are so few doctors, treatments and research articles. It has been connected with mental health, anxiety, intelligence, heart conditions and other aspects of our lives. And frankly, as a caregiver for children impacted with FASD, sleep is vital for all aspects of our entire family.
On another note, at the last SEAC meeting for the Catholic District School Board of Eastern Ontario, Superintendent Dr. Hawes announced they elected to use the additional Ministry money to hire an Occupational Therapist to focus on sensory needs, a lead Psychologist, a Behavioural Psychologist, and a Speech-Language Pathologist to create a multidisciplinary team to support all students. It is so inspiring to me that this school board took action to support its students in such an unique way. Once again, I am so proud of our school board in making this happen.
Sunday, 3 June 2018
The Importance of Words and FASD
It has been a while again between work and life but I recently had an interesting conversation dealing with the new FASD website coming out later. We were having a discussion about the difference between disorder versus disability versus syndrome versus injury. It was being discussed because of the different labels that have been given over the years related to FASD.
Over the years, it has been called Fetal Alcohol Syndrome (FAS), Alcohol-Related Neurodevelopmental Disorder (ARND), Neurodevelopmental Disorder - PreNatal Alcohol Exposure ND-PAE or sometimes (PAE), Partial Fetal Alcohol Syndrome (pFAS) and Alcohol-Related Birth Disorder or Defects (ARBD)
Today, we use Fetal Alcohol Spectrum Disorder (FASD) because we recognize this term really captures the impact of this disability. We know now this disability is a permanent, brain-based, whole-body disability that doesn't have a cure at this time. We also know with the proper supports, it can be managed.
When you think about the term Fetal Alcohol Spectrum Disorder, each word is so key. Fetal means it is developed during pregnancy and only pregnancy. Alcohol means it comes from all types of alcohol and only alcohol. Drug usage during pregnancy does not cause FASD. It also doesn't matter whether is is beer, wine, spirits, liquor, hard lemonade or anything else. Spectrum is huge because it means each person living with FASD is totally unique to themselves and normally refers to cognitive levels. They may be anywhere on the intelligence or cognitive scale from gifted to developmentally disabled and can have a wide assortment of other medical conditions. Finally, disorder. In its purest form, it means the absence or opposite of order. It has a universal, permanent meaning to it. Disability is the absence or opposite of ability. This is a smaller term. An ability is one function or skill. A syndrome is a large collection of temporary effects and an injury is a temporary effect on a particular part.
In the Post Traumatic Stress Disorder world, the military now uses the term Operational Stress Injury. Stephane Grenier makes a great argument in his writings in that PTSD is not an universal unspecified lack of order which has very negative stigma in the military world. In the military, you never want to have a lack of order and it is not an unspecified thing. It is temporary, not permanent which is why they now use Operational Stress Injury. It comes from a military operation, it creates stress and it is temporary and healable which is why disorder is not the right term in that situation.
Autism Spectrum Disorder went through the same thing. It used to have intelligence levels associated with it where it would be called Asperger's Syndrome, Autism (mild, moderate, and severe type) and PDD-NOS where the NOS means Not Otherwise Specified in the DSM-V. Autism achieved their goal of getting everyone to understand intelligence levels have nothing to do with this.
I love it when people don't know what FASD stands for because it gives me the opportunity to share with them the significance of each term. I just had a conversation this week with a lady who thought FASD was a condition that the birth mother can develop. Once she understood FASD is developed in the child, not the mother, she was curious as to how it will manifest itself in the child. At the end, she was speculating about a child she knows and whether he has FASD. This is why it is so important we are speaking as one unified voice with one unified term. Once Autism got all their terms classified as ASD, they took a huge step forward in their advocacy. It shouldn't matter if we have suspected FASD, at-risk for FASD, ARND, ARBD, ND-PAE, pFAS, FAS, or FASD. We are all under the FASD umbrella and together, we can make a difference whether it is one person at a time or one country at a time.
On the subject of the importance of words, Kids Brain Health Network and Katelyn Verstraten wrote a great article on the significance of Dr. Popova's study on FASD prevalence. Please feel free to check it out. http://kidsbrainhealth.ca/index.php/2018/05/28/beyond-the-numbers-why-canadian-neurodisability-prevalence-rates-matter/
Over the years, it has been called Fetal Alcohol Syndrome (FAS), Alcohol-Related Neurodevelopmental Disorder (ARND), Neurodevelopmental Disorder - PreNatal Alcohol Exposure ND-PAE or sometimes (PAE), Partial Fetal Alcohol Syndrome (pFAS) and Alcohol-Related Birth Disorder or Defects (ARBD)
Today, we use Fetal Alcohol Spectrum Disorder (FASD) because we recognize this term really captures the impact of this disability. We know now this disability is a permanent, brain-based, whole-body disability that doesn't have a cure at this time. We also know with the proper supports, it can be managed.
When you think about the term Fetal Alcohol Spectrum Disorder, each word is so key. Fetal means it is developed during pregnancy and only pregnancy. Alcohol means it comes from all types of alcohol and only alcohol. Drug usage during pregnancy does not cause FASD. It also doesn't matter whether is is beer, wine, spirits, liquor, hard lemonade or anything else. Spectrum is huge because it means each person living with FASD is totally unique to themselves and normally refers to cognitive levels. They may be anywhere on the intelligence or cognitive scale from gifted to developmentally disabled and can have a wide assortment of other medical conditions. Finally, disorder. In its purest form, it means the absence or opposite of order. It has a universal, permanent meaning to it. Disability is the absence or opposite of ability. This is a smaller term. An ability is one function or skill. A syndrome is a large collection of temporary effects and an injury is a temporary effect on a particular part.
In the Post Traumatic Stress Disorder world, the military now uses the term Operational Stress Injury. Stephane Grenier makes a great argument in his writings in that PTSD is not an universal unspecified lack of order which has very negative stigma in the military world. In the military, you never want to have a lack of order and it is not an unspecified thing. It is temporary, not permanent which is why they now use Operational Stress Injury. It comes from a military operation, it creates stress and it is temporary and healable which is why disorder is not the right term in that situation.
Autism Spectrum Disorder went through the same thing. It used to have intelligence levels associated with it where it would be called Asperger's Syndrome, Autism (mild, moderate, and severe type) and PDD-NOS where the NOS means Not Otherwise Specified in the DSM-V. Autism achieved their goal of getting everyone to understand intelligence levels have nothing to do with this.
I love it when people don't know what FASD stands for because it gives me the opportunity to share with them the significance of each term. I just had a conversation this week with a lady who thought FASD was a condition that the birth mother can develop. Once she understood FASD is developed in the child, not the mother, she was curious as to how it will manifest itself in the child. At the end, she was speculating about a child she knows and whether he has FASD. This is why it is so important we are speaking as one unified voice with one unified term. Once Autism got all their terms classified as ASD, they took a huge step forward in their advocacy. It shouldn't matter if we have suspected FASD, at-risk for FASD, ARND, ARBD, ND-PAE, pFAS, FAS, or FASD. We are all under the FASD umbrella and together, we can make a difference whether it is one person at a time or one country at a time.
On the subject of the importance of words, Kids Brain Health Network and Katelyn Verstraten wrote a great article on the significance of Dr. Popova's study on FASD prevalence. Please feel free to check it out. http://kidsbrainhealth.ca/index.php/2018/05/28/beyond-the-numbers-why-canadian-neurodisability-prevalence-rates-matter/
Wednesday, 9 May 2018
Input Needed from the FASD World
It has been a while but there are several things where our input is needed.
1) Jo-Anne Robertson, Project Manager for the provincial FASD website is asking for teenagers and young adults living with FASD to contact her regarding what they would like to see on the website.
2) She is also asking for Francophones and Indigenous individuals to give input as well.
Jo-Anne is planning to hold small focus group / interviews with teens living with FASD. If you know any teens or young adutls (<25 years who might want to give input into the website, please contact Jo-Anne j.robertson@healthnexus.ca
Please feel free to contact Jo-Anne directly if you would like to give input.
3) Margaret Van Beers is asking service providers and families from the Lanark Leeds-Grenville area to complete the following surveys.
As part of the rollout of the new FASD Worker position, we're distributing two surveys:
For Families - https://www.surveymonkey.com/
For Service Providers - https://www.surveymonkey.com/
As I mentioned at our last meeting we are distributing it widely and invite you to share with others as you see fit. The information gathered will be submitted to MCYS, and will also help us to plan for the new FASD position in LLG. We will leave the surveys open until June 10, 2018.
4) Citizen Advocacy announced November 2, 3 as the date for their 2nd annual FASD Symposium in Ottawa with more details to come.
5) The Rural FASD Support Network has announced Sat. June 16 at 10:30am at Calvary Bible Church in Smiths Falls as its launch date. More details still coming on it as well.
6) I also heard from Marian Mlakar of MCYS regarding status on four of the six initiatives.
The organization that is funding and coordinating parent support groups is still being determined.
Key Workers were assigned to the 21 provincial coordinating agencies who also determine the local special needs strategy. They are currently doing needs analysis and they will determine high needs areas in the fall.
Health Nexus and Jo-Anne Robertson is creating the FASD website for the province with input from caregivers, experts, youth, and service providers.
Finally, MCYS is going to create their advisory committee later this year consisting of youth and caregivers.
7) Yes, Bill 191 and later Bill 44 to amend the Education Act regarding FASD has died with the writ drop. We will be starting all over again in the fall.
8) Finally, got a reminder today of the constant battle we fight. We applied for the Special Services at Home money for all three kids through the Ministry of Community and Social Services. Apparently, FASD does not meet their 2018 guidelines for a physical or developmental disability. However, autism, acquired brain injury, an intellectual disability, or cerebral palsy do meet their guidelines of a disability. How many more fights do we have to do with the province???!!! So I guess I get to do another appeal. Otherwise, we get to pay for any respite or developmental programming we do with the children.
We also got told we are not eligible for the Assistance for Children with Severe Disabilities because our gross family income is slightly too high. However, we were required to apply separately for each child and they don't take into account at all we have more than one disabled child. Our income is too high for one disabled child and their rules don't allow them to consider any other disabled children in the family.
1) Jo-Anne Robertson, Project Manager for the provincial FASD website is asking for teenagers and young adults living with FASD to contact her regarding what they would like to see on the website.
2) She is also asking for Francophones and Indigenous individuals to give input as well.
Jo-Anne is seeking Indigenous and Francophone individuals to either join the advisory or consult on website. Advisory members are asked to refer Indigenous/Francophone individuals who might be interested to contact Jo-Anne j.robertson@healthnexus.ca
Jo-Anne is planning to hold small focus group / interviews with teens living with FASD. If you know any teens or young adutls (<25 years who might want to give input into the website, please contact Jo-Anne j.robertson@healthnexus.ca
Please feel free to contact Jo-Anne directly if you would like to give input.
3) Margaret Van Beers is asking service providers and families from the Lanark Leeds-Grenville area to complete the following surveys.
As part of the rollout of the new FASD Worker position, we're distributing two surveys:
For Families - https://www.surveymonkey.com/
For Service Providers - https://www.surveymonkey.com/
As I mentioned at our last meeting we are distributing it widely and invite you to share with others as you see fit. The information gathered will be submitted to MCYS, and will also help us to plan for the new FASD position in LLG. We will leave the surveys open until June 10, 2018.
4) Citizen Advocacy announced November 2, 3 as the date for their 2nd annual FASD Symposium in Ottawa with more details to come.
5) The Rural FASD Support Network has announced Sat. June 16 at 10:30am at Calvary Bible Church in Smiths Falls as its launch date. More details still coming on it as well.
6) I also heard from Marian Mlakar of MCYS regarding status on four of the six initiatives.
The organization that is funding and coordinating parent support groups is still being determined.
Key Workers were assigned to the 21 provincial coordinating agencies who also determine the local special needs strategy. They are currently doing needs analysis and they will determine high needs areas in the fall.
Health Nexus and Jo-Anne Robertson is creating the FASD website for the province with input from caregivers, experts, youth, and service providers.
Finally, MCYS is going to create their advisory committee later this year consisting of youth and caregivers.
7) Yes, Bill 191 and later Bill 44 to amend the Education Act regarding FASD has died with the writ drop. We will be starting all over again in the fall.
8) Finally, got a reminder today of the constant battle we fight. We applied for the Special Services at Home money for all three kids through the Ministry of Community and Social Services. Apparently, FASD does not meet their 2018 guidelines for a physical or developmental disability. However, autism, acquired brain injury, an intellectual disability, or cerebral palsy do meet their guidelines of a disability. How many more fights do we have to do with the province???!!! So I guess I get to do another appeal. Otherwise, we get to pay for any respite or developmental programming we do with the children.
We also got told we are not eligible for the Assistance for Children with Severe Disabilities because our gross family income is slightly too high. However, we were required to apply separately for each child and they don't take into account at all we have more than one disabled child. Our income is too high for one disabled child and their rules don't allow them to consider any other disabled children in the family.
Friday, 20 April 2018
Voices needed for Ontario FASD Website
It has just been announced that Best Start Resource Centre by Health Nexus http://en.beststart.org/ has received the provincial contract to develop the one stop FASD website for caregivers in the province of Ontario. They are asking for parents/caregivers for all parts and locales of the province to serve on their advisory committee in developing this website. https://drive.google.com/open?id=0B4G_PCr5fBe9eDBJTEh6UHoxZXk5eTZYb29mTGk3OGFfZHdj
If you are not in a position to serve on this committee but would like to contribute information, please feel free to comment to me on this blog. They want to develop a website that will be useful to us so please feel free to pass along anything you would like to see included within this website.
It has also been announced that the Kingston FASD Key Worker has been hired by Kids Inclusive at this point. Interviewing continues for the Ottawa area and the Lanark Leeds-Grenville area.
If you are not in a position to serve on this committee but would like to contribute information, please feel free to comment to me on this blog. They want to develop a website that will be useful to us so please feel free to pass along anything you would like to see included within this website.
It has also been announced that the Kingston FASD Key Worker has been hired by Kids Inclusive at this point. Interviewing continues for the Ottawa area and the Lanark Leeds-Grenville area.
Tuesday, 17 April 2018
The Power of a Caregiver
Last week, 45 FASD reps from across the province came together with one voice and met with over 30 MPP’s. When you consider that FASD has never had an advocacy day at Queen’s Park before and there has never been event where FASD reps from all parts of the province were physically together before, this could be considered a historical event. When you add in the factor that Kids Brain Health Network timed Dr. Popova’s report release with this event and created a lot of media attention, this could certainly be considered a rousing success.
The assumption going into this event was the focus needed to be on education. There were only seven MPP’s who spoke toward the FASD motion last December so we assumed the 25 MPP’s who joined us were starting to learn about FASD. It was very clear MPP Anderson of Durham, MPP Kiwala of Kingston, MPP Clark of Leeds-Grenville and Minister McMahon of Halton are very well informed. It was also clear we have currently managed not to be a partisan issue. MPP’s from all three parties came to learn about FASD and have consistently voted in favour of our motions. In the history of Ontario, only four pieces of FASD legislature have been passed.
- Sandy’s Law, back in 2004,
- the MCYS initiatives, last year
- Sept 9 as FASD Awareness Day, last year
- Bill 191 and now Bill 44, this year
What they all have in common is they were the results of caregivers speaking up. Caregivers, who are trying to support their children today, have the most powerful and loudest voice of all. While the majority of FASD reps present April 11 would be considered service providers or researchers, they are limited in their advocacy because of political considerations. As a caregiver, I’ll talk to anyone at Queen’s Park willing to listen.
I was at a writer’s workshop recently and was reminded of five important facts about writing by Managing Editor of Faith Today, Karen Stiller. I share this with you because writing and advocacy go hand in hand.
1) It is hard and discouraging.
2) You must have a passion in your belly to keep going.
3) Tell the truth. Don’t dance around it, don’t be ashamed, own it and be genuine.
4) Build a supporting community around you and hold onto them at all cost.
5) Be a risk-taker. Ask yourself why am I afraid?
It is these five facts that make you the ideal advocate. When you persevere, when it is not a job but a life, when you are genuine and not coming with an agenda, when we come together as one voice, and we show courage, people respond to that. What do we have to lose? We have nothing now and nowhere to go but up. We have heard so many times from so many people “No!” that personally it doesn’t even affect me anymore? My three children, who really struggle speaking to people they don’t know, sat in a room with 75 strangers for two hours, controlled their anxiety and then found it within themselves to share their stories with MPP Taylor afterwards. They then sat quietly in the gallery as they watched Bill 44 pass first reading. If they can do it, I most certainly can do it.
I know what my next four objectives are.
First, I am taking on the CRA, Minister Morneau and this Disability Tax Credit mess. How all three of my children don’t meet their definition of disabled is insane. I have now taken it to the appeal level and preparing for tax court. If you are not aware, the CRA is currently rejecting 70% of applicants who have been identified as disabled by Disability Support Programs. I reached out to Lisa Raitt, Deputy Leader of the Opposition who responded positively and now starting the conversation with her about this.
Second, I will be the first one up asking a question at my local All Candidates debate in May because
local media always publishes the first two questions. My question will be along the lines of “Our current government for the first time ever budgeted money for the 90,000 children impacted by Fetal Alcohol Spectrum Disorder this year which is the most prevalent neurodisability in Ontario and twice as prevalent as autism. If you formed the next government, what would you do to ensure individuals
impacted by FASD are properly supported?”
Third, I will continue to network locally, spread the word and ensure our local Key Worker has what they need to successfully support our community.
Lastly, as Doug Ford is making his way around the province, we keep talking to Simone about FASD.
Simone is part of his campaign team as the main policy advisor. She is in her late 20’s, long black hair, and will be hanging around in the back with 3-4 other young men. She has been told about FASD four times in the last three days. If you are going to a Doug Ford event is in your area, have a conversation with Simone.
I reach out to you again, my fellow caregivers. I heard it repeated on Wednesday that autism advocacy started 15 years ago with a few caregivers having rallies on the front lawn of Queen’s Park. We as caregivers need to lead the charge. MPP’s will work with us if we keep reaching out to them. Service providers respond to us when we provide the clients for them. Researchers reach out to us when they know we will volunteer. Media like us because we create political news and the heart-warming stories of courage, grit and honesty. Don’t forget, you have the greatest degree of all, “Caregiver with lived experience!” What else needs to be said?
The assumption going into this event was the focus needed to be on education. There were only seven MPP’s who spoke toward the FASD motion last December so we assumed the 25 MPP’s who joined us were starting to learn about FASD. It was very clear MPP Anderson of Durham, MPP Kiwala of Kingston, MPP Clark of Leeds-Grenville and Minister McMahon of Halton are very well informed. It was also clear we have currently managed not to be a partisan issue. MPP’s from all three parties came to learn about FASD and have consistently voted in favour of our motions. In the history of Ontario, only four pieces of FASD legislature have been passed.
- Sandy’s Law, back in 2004,
- the MCYS initiatives, last year
- Sept 9 as FASD Awareness Day, last year
- Bill 191 and now Bill 44, this year
What they all have in common is they were the results of caregivers speaking up. Caregivers, who are trying to support their children today, have the most powerful and loudest voice of all. While the majority of FASD reps present April 11 would be considered service providers or researchers, they are limited in their advocacy because of political considerations. As a caregiver, I’ll talk to anyone at Queen’s Park willing to listen.
I was at a writer’s workshop recently and was reminded of five important facts about writing by Managing Editor of Faith Today, Karen Stiller. I share this with you because writing and advocacy go hand in hand.
1) It is hard and discouraging.
2) You must have a passion in your belly to keep going.
3) Tell the truth. Don’t dance around it, don’t be ashamed, own it and be genuine.
4) Build a supporting community around you and hold onto them at all cost.
5) Be a risk-taker. Ask yourself why am I afraid?
It is these five facts that make you the ideal advocate. When you persevere, when it is not a job but a life, when you are genuine and not coming with an agenda, when we come together as one voice, and we show courage, people respond to that. What do we have to lose? We have nothing now and nowhere to go but up. We have heard so many times from so many people “No!” that personally it doesn’t even affect me anymore? My three children, who really struggle speaking to people they don’t know, sat in a room with 75 strangers for two hours, controlled their anxiety and then found it within themselves to share their stories with MPP Taylor afterwards. They then sat quietly in the gallery as they watched Bill 44 pass first reading. If they can do it, I most certainly can do it.
I know what my next four objectives are.
First, I am taking on the CRA, Minister Morneau and this Disability Tax Credit mess. How all three of my children don’t meet their definition of disabled is insane. I have now taken it to the appeal level and preparing for tax court. If you are not aware, the CRA is currently rejecting 70% of applicants who have been identified as disabled by Disability Support Programs. I reached out to Lisa Raitt, Deputy Leader of the Opposition who responded positively and now starting the conversation with her about this.
Second, I will be the first one up asking a question at my local All Candidates debate in May because
local media always publishes the first two questions. My question will be along the lines of “Our current government for the first time ever budgeted money for the 90,000 children impacted by Fetal Alcohol Spectrum Disorder this year which is the most prevalent neurodisability in Ontario and twice as prevalent as autism. If you formed the next government, what would you do to ensure individuals
impacted by FASD are properly supported?”
Third, I will continue to network locally, spread the word and ensure our local Key Worker has what they need to successfully support our community.
Lastly, as Doug Ford is making his way around the province, we keep talking to Simone about FASD.
Simone is part of his campaign team as the main policy advisor. She is in her late 20’s, long black hair, and will be hanging around in the back with 3-4 other young men. She has been told about FASD four times in the last three days. If you are going to a Doug Ford event is in your area, have a conversation with Simone.
I reach out to you again, my fellow caregivers. I heard it repeated on Wednesday that autism advocacy started 15 years ago with a few caregivers having rallies on the front lawn of Queen’s Park. We as caregivers need to lead the charge. MPP’s will work with us if we keep reaching out to them. Service providers respond to us when we provide the clients for them. Researchers reach out to us when they know we will volunteer. Media like us because we create political news and the heart-warming stories of courage, grit and honesty. Don’t forget, you have the greatest degree of all, “Caregiver with lived experience!” What else needs to be said?
Friday, 13 April 2018
Evolution of the FASD Awareness Day in Ontario
You may have heard already about the very exciting day at Queen's Park in Ontario this past Wednesday. I had the pleasure of being involved in some of the activities and spoke with others about their experiences.
The Kingston Parent Action Group through MPP Sophie Kiwala held a FASD Awareness Day at Queen's Park where over 35 MPP's and staff met with 45 FASD reps from around the province. As well, private meetings were done with six MPP's including Education Minister Naidoo-Harris. Queen's Park and MPP Kiwala used this day to reintroduce the former Bill 191 as Bill 44 now where it unanimously passed first reading again. Kids Brain Health Network and CanFASD also used this opportunity to raise the FASD profile. KBHN and Dr. Popova released her earth-shattering study on FASD prevalence in Canada where we learned FASD prevalence is almost 3% and twice as much as autism. Because of this news release, CTV, the National Post and Post Media, the Agenda with Steve Paikin and Amber Mac all added to the news cycle of the day. I have included those links below.
https://www.ctvnews.ca/mobile/health/fetal-alcohol-disorder-more-prevalent-than-previously-thought-study-1.3879947
http://nationalpost.com/news/canada/more-than-a-million-canadians-could-have-fetal-alcohol-syndrome-disorder-study
https://www.facebook.com/ambermac/videos/845018349031665/
https://tvo.org/video/programs/the-agenda-with-steve-paikin/tracking-fetal-alcohol-spectrum-disorder
I would also encourage you to comment and like all three posts. We want the media to continue publishing FASD stories.
The Kingston Parent Action Group deliberately set out to get representation from all regions and sectors throughout the province of Ontario to unify the FASD movement in one coordinated effort and make the strongest possible statement to Queen's Park that this is a provincial and national issue. We accomplished that goal. With this experience, we challenge each region now to have their own Advocacy Day at Queen's Park.
It is not difficult to do. Our coordinator, Len Whalen, contacted MPP Kiwala and asked her staff to reserve a room for us during lunchtime. Once the reservation was done, we then seeked sponsorship to cover the cost of the lunch. If an organization of 10-12 people did this, expect the cost to be around $800-1000 with an attendance of 30 people. In our case, Dr. James Reynolds of Kids Brain Health Network and Steve and Karen Catney of Alliance Youth Services did the sponsorship.
We then from our group picked a coordinator, invitation person, registration person, display person and photographer. Realistically, if you have a group of 10-12 people coming, two people could do all of this.
The coordinator should communicate to the group the details of the day, get the security passes, booked the caterer and the room and determine the agenda of the day. The invitation person would create the invitation, send it to the MPP constituency offices, log the responses, and coordinate the private meetings. Potentially, this person could also pass out the name tags on the day and setup the display table. In our particular case, the invitation was sent 8 weeks before the day and a reminder with new information was sent every Monday morning for all 8 weeks. Staff members do come and go through the morning, the hosting MPP does the introductory speech at noon followed by an organizational rep for a total of 20 minutes. The room was cleared by 1:30pm.
It was suggested that we have a banner with our logo on display, informational pamphlets, a clear mission statement, and a pin or ribbon that could be worn. For our private meetings with MPP's, we gave them a one page briefing note ahead of time as we had 30 minutes to share with the MPP followed by their questions. Each team had a lead who directed the dialogue with the MPP.
I have attached an example of a briefing note and the spreadsheet used to track the bookings.
https://docs.google.com/document/d/1yTnYyWzLZT06pF8T5r6cojfQk4TffbFBgwqgAAsLPrg/edit?usp=sharing
https://docs.google.com/spreadsheets/d/1ACQyMfcqygDUYPxw42PFCZJ_FLGNgBiSN7uOZg_GdG8/edit?usp=sharing
In later blogs, I will share information from the day, but there was one key piece. One MPP told us how Autism Advocacy began in Ontario 15 years ago. It started with a multiple rallies on the front lawn of Queen's Park. With each rally, news coverage increased and political engagement increased. This was followed by a letter writing campaign that is still happening today and frequent advocacy days. In my opinion, we need to be looking at having a rally on the front lawn in September when Queen's Park is back in session. The Kingston PAG is planning its next advocacy day for the fall. From what I saw, there is no reason why Ottawa, Halton, Waterloo, GTA, and the North aren't organizing their own advocacy day for the next year. If you would like to know who the 45 participants were as they have now seen exactly how it is done, please feel free to comment to this blog and I will share the list with you.
MPP Kiwala commented that of all the Advocacy Groups she has hosted, we were by far the most organized she had ever seen. We have made a great first impression, let's keep the momentum going.
The Kingston Parent Action Group through MPP Sophie Kiwala held a FASD Awareness Day at Queen's Park where over 35 MPP's and staff met with 45 FASD reps from around the province. As well, private meetings were done with six MPP's including Education Minister Naidoo-Harris. Queen's Park and MPP Kiwala used this day to reintroduce the former Bill 191 as Bill 44 now where it unanimously passed first reading again. Kids Brain Health Network and CanFASD also used this opportunity to raise the FASD profile. KBHN and Dr. Popova released her earth-shattering study on FASD prevalence in Canada where we learned FASD prevalence is almost 3% and twice as much as autism. Because of this news release, CTV, the National Post and Post Media, the Agenda with Steve Paikin and Amber Mac all added to the news cycle of the day. I have included those links below.
https://www.ctvnews.ca/mobile/health/fetal-alcohol-disorder-more-prevalent-than-previously-thought-study-1.3879947
http://nationalpost.com/news/canada/more-than-a-million-canadians-could-have-fetal-alcohol-syndrome-disorder-study
https://www.facebook.com/ambermac/videos/845018349031665/
https://tvo.org/video/programs/the-agenda-with-steve-paikin/tracking-fetal-alcohol-spectrum-disorder
I would also encourage you to comment and like all three posts. We want the media to continue publishing FASD stories.
The Kingston Parent Action Group deliberately set out to get representation from all regions and sectors throughout the province of Ontario to unify the FASD movement in one coordinated effort and make the strongest possible statement to Queen's Park that this is a provincial and national issue. We accomplished that goal. With this experience, we challenge each region now to have their own Advocacy Day at Queen's Park.
It is not difficult to do. Our coordinator, Len Whalen, contacted MPP Kiwala and asked her staff to reserve a room for us during lunchtime. Once the reservation was done, we then seeked sponsorship to cover the cost of the lunch. If an organization of 10-12 people did this, expect the cost to be around $800-1000 with an attendance of 30 people. In our case, Dr. James Reynolds of Kids Brain Health Network and Steve and Karen Catney of Alliance Youth Services did the sponsorship.
We then from our group picked a coordinator, invitation person, registration person, display person and photographer. Realistically, if you have a group of 10-12 people coming, two people could do all of this.
The coordinator should communicate to the group the details of the day, get the security passes, booked the caterer and the room and determine the agenda of the day. The invitation person would create the invitation, send it to the MPP constituency offices, log the responses, and coordinate the private meetings. Potentially, this person could also pass out the name tags on the day and setup the display table. In our particular case, the invitation was sent 8 weeks before the day and a reminder with new information was sent every Monday morning for all 8 weeks. Staff members do come and go through the morning, the hosting MPP does the introductory speech at noon followed by an organizational rep for a total of 20 minutes. The room was cleared by 1:30pm.
It was suggested that we have a banner with our logo on display, informational pamphlets, a clear mission statement, and a pin or ribbon that could be worn. For our private meetings with MPP's, we gave them a one page briefing note ahead of time as we had 30 minutes to share with the MPP followed by their questions. Each team had a lead who directed the dialogue with the MPP.
I have attached an example of a briefing note and the spreadsheet used to track the bookings.
https://docs.google.com/document/d/1yTnYyWzLZT06pF8T5r6cojfQk4TffbFBgwqgAAsLPrg/edit?usp=sharing
https://docs.google.com/spreadsheets/d/1ACQyMfcqygDUYPxw42PFCZJ_FLGNgBiSN7uOZg_GdG8/edit?usp=sharing
In later blogs, I will share information from the day, but there was one key piece. One MPP told us how Autism Advocacy began in Ontario 15 years ago. It started with a multiple rallies on the front lawn of Queen's Park. With each rally, news coverage increased and political engagement increased. This was followed by a letter writing campaign that is still happening today and frequent advocacy days. In my opinion, we need to be looking at having a rally on the front lawn in September when Queen's Park is back in session. The Kingston PAG is planning its next advocacy day for the fall. From what I saw, there is no reason why Ottawa, Halton, Waterloo, GTA, and the North aren't organizing their own advocacy day for the next year. If you would like to know who the 45 participants were as they have now seen exactly how it is done, please feel free to comment to this blog and I will share the list with you.
MPP Kiwala commented that of all the Advocacy Groups she has hosted, we were by far the most organized she had ever seen. We have made a great first impression, let's keep the momentum going.
Monday, 2 April 2018
Creating success in the small things
I was watching a basketball game the other day and the announcer was talking about another announcer. A team had just won on an incredible last second shot and the announcer was yelling and screaming and immediately went to his phone to check the news cycle. The second announcer was saying we have become so conditioned to scrolling the news cycle now that we have lost perspective of what is truly important.
I found this statement to be so true. My family have just spent the last four days isolating ourselves on the farm and pretty much ignoring the world. It was so nice! It occurred to me for our kids and us, this is one of our big secrets to success.
Social media and the drama that comes with it is really the biggest enemy our children are currently trying to overcome. We have seen over and over again when our children is supported by people who understand their needs, they succeed. It is also why we guard our home so diligently from outside sources because if it isn't the safe retreat we need, we know firsthand just how bad life can get. This week, my oldest daughter had the opportunity to create a Facebook page and chose otherwise. For us, this might be the greatest accomplishment she has done yet and a direct testimony to the work her support network has done. Our middle daughter showcased her butterscotch pie this week at 4H Achievement day. She made the crust from scratch, the pie from scratch, and the flambed whipped cream from scratch. Our son watch a Transformers movie marathon in bed for two days, slept to noon the next two days and finally got back to his old self. It has been a long time since he slept more than six hours. It is absolutely amazing to me how that cool spring and fall air is so important to him. Our entire four day weekend consisted of singing in church with friends, eating my daughter's pie, having lunch with the Mom's, dreaming about what we are doing this summer, and walking our 3 km trail with the dog every single day. No fighting, no yelling, everyone being really lazy and just enjoying each other's company.
Shelley is always reminding me not to get too busy. My propensity for work can get crazy sometimes where 16 hour days can become the norm and I keep moving to the next project. However, I have seen what happens when I try to put those same expectations on my children. Things break down. But when I remember just how many 18 and 16 year old's are work ready, I realize they really do have bright future. My oldest is discovering that she is quite the sales person at her co-op. While she is constantly getting rejected by us as to which horse equipment we are buying because she is always picking the most expensive one, she is great at up-selling customers because she makes great arguments, mainly because she has a lot of practice. Good thing Shelley and I are good at saying no. For an 18 year old to have that skill, that is impressive. And Cassie, the 16 year old, loves washing dishes and cleaning the kitchen as much as she loves serving customers and making meals at the bakery and home. Yes, I know, all you teenage parents are jealous right now.
I have said it before and I will say it again, if you and your child are still pushing forward, you have achieved success. These small victories, when put together, always represent something bigger than just themselves.
Two small notes: Our little group out here in Eastern Ontario has just created our own website and Facebook page. Please check us out at Rural FASD Support Network .
If you didn't see in the Ontario budget, monies was devoted to FASD diagnostics. That is a huge one for us. However, Bill 191 was eliminated in the prorogation and hasn't reappeared. Not sure at this point if it is permanently gone yet.
I found this statement to be so true. My family have just spent the last four days isolating ourselves on the farm and pretty much ignoring the world. It was so nice! It occurred to me for our kids and us, this is one of our big secrets to success.
Social media and the drama that comes with it is really the biggest enemy our children are currently trying to overcome. We have seen over and over again when our children is supported by people who understand their needs, they succeed. It is also why we guard our home so diligently from outside sources because if it isn't the safe retreat we need, we know firsthand just how bad life can get. This week, my oldest daughter had the opportunity to create a Facebook page and chose otherwise. For us, this might be the greatest accomplishment she has done yet and a direct testimony to the work her support network has done. Our middle daughter showcased her butterscotch pie this week at 4H Achievement day. She made the crust from scratch, the pie from scratch, and the flambed whipped cream from scratch. Our son watch a Transformers movie marathon in bed for two days, slept to noon the next two days and finally got back to his old self. It has been a long time since he slept more than six hours. It is absolutely amazing to me how that cool spring and fall air is so important to him. Our entire four day weekend consisted of singing in church with friends, eating my daughter's pie, having lunch with the Mom's, dreaming about what we are doing this summer, and walking our 3 km trail with the dog every single day. No fighting, no yelling, everyone being really lazy and just enjoying each other's company.
Shelley is always reminding me not to get too busy. My propensity for work can get crazy sometimes where 16 hour days can become the norm and I keep moving to the next project. However, I have seen what happens when I try to put those same expectations on my children. Things break down. But when I remember just how many 18 and 16 year old's are work ready, I realize they really do have bright future. My oldest is discovering that she is quite the sales person at her co-op. While she is constantly getting rejected by us as to which horse equipment we are buying because she is always picking the most expensive one, she is great at up-selling customers because she makes great arguments, mainly because she has a lot of practice. Good thing Shelley and I are good at saying no. For an 18 year old to have that skill, that is impressive. And Cassie, the 16 year old, loves washing dishes and cleaning the kitchen as much as she loves serving customers and making meals at the bakery and home. Yes, I know, all you teenage parents are jealous right now.
I have said it before and I will say it again, if you and your child are still pushing forward, you have achieved success. These small victories, when put together, always represent something bigger than just themselves.
Two small notes: Our little group out here in Eastern Ontario has just created our own website and Facebook page. Please check us out at Rural FASD Support Network .
If you didn't see in the Ontario budget, monies was devoted to FASD diagnostics. That is a huge one for us. However, Bill 191 was eliminated in the prorogation and hasn't reappeared. Not sure at this point if it is permanently gone yet.
Friday, 2 March 2018
Mental Health and trauma
I recently had the opportunity to hear Dr. Adam Montgomery speak about his research with our veterans who served in Afghanistan and Operational Stress Injury which is sometimes described as Post Traumatic Stress Disorder by civilians. One point he brought out is sometimes it is the witness to trauma who suffers more than the recipient. The main reason is because of that sense of helplessness that comes with it and the feeling that they should have done something about it. I realized from that conversation that is why caregivers of individuals impacted by FASD will struggle with mental health sometimes. When our child is having an intense emotional outburst and we can't figure out how to help them, we can get that sense of helplessness. We will think we should have done something differently and take responsibility. Again, this is why a counselor or psycho therapist for the entire family is so important to help us find strategies on how to manage that trauma.
While we recognize all of our stories are different and unique to our situation, Shelley would like to share her story with you and how she is coming back from a debilitating stress injury. She was asked to share her story recently at an Employer Symposium with the purpose of showing how an employer can have a key role in supporting individuals with mental health challenges.
https://youtu.be/y5yZa01T6U4
To me, this is why we stress every caregiver needs support as well. It can be challenging to maintain hope for both the individual impacted by FASD as well as their caregiver. This is why the need for school boards and caregivers to be in collaboration as to how to support our children impacted by FASD is vital for all parties involved. When solutions can be found and success is maintained by all, individuals, caregivers and teachers are renewed to continue progressing forward.
You may have seen this petition already supporting Bill 191 but if you haven't, please consider signing and passing it onto all your friends and family. https://www.thepetitionsite.co
Bill 191 continues to wait for House Leader Yasir Navqi to schedule its second reading. It should be noted that 3rd party House Leader Gilles Bisson has asked for an audience with a FASD delegation so progress continues to slowly be made.
While we recognize all of our stories are different and unique to our situation, Shelley would like to share her story with you and how she is coming back from a debilitating stress injury. She was asked to share her story recently at an Employer Symposium with the purpose of showing how an employer can have a key role in supporting individuals with mental health challenges.
https://youtu.be/y5yZa01T6U4
To me, this is why we stress every caregiver needs support as well. It can be challenging to maintain hope for both the individual impacted by FASD as well as their caregiver. This is why the need for school boards and caregivers to be in collaboration as to how to support our children impacted by FASD is vital for all parties involved. When solutions can be found and success is maintained by all, individuals, caregivers and teachers are renewed to continue progressing forward.
You may have seen this petition already supporting Bill 191 but if you haven't, please consider signing and passing it onto all your friends and family. https://www.thepetitionsite.co
Bill 191 continues to wait for House Leader Yasir Navqi to schedule its second reading. It should be noted that 3rd party House Leader Gilles Bisson has asked for an audience with a FASD delegation so progress continues to slowly be made.
Friday, 23 February 2018
Bill 191 update with MPP Hillier's public support
This week, as promised, I wanted to give you an update on the impact our advocacy is having.
1) The second reading of Bill 191 has been added to the orders of the day. It is currently waiting to be added to the schedule. This decision is made by the House Leaders led by the Honourable Yasir Navqi in consultation with MPP Jim Wilson and MPP Gilles Bisson. MPP Randy Hillier just shared with me the following letter advocating for this scheduling. MPP Hillier letter You will notice that he states this bill has a lot of support from MPP's and there is no reasonable explanation for why it should be delayed. I believe this is the first public statement made by an MPP in support of Bill 191.
I would encourage you to follow suit and be loud. Copy and paste the following letter into an email and send it to the three house leaders, MPP Kiwala and MPP Hillier, and your local MPP. You can also mail the email to the addresses listed at the top of MPP Hillier's letter.
February 23, 2018
Dear House Leaders,
I am writing to you today regarding Bill 191 Education Amendment Act (Fetal Alcohol Spectrum Disorder) 2017, introduced in the House by MPP Sophie Kiwala (Kingston and the Islands) on December 13, 2017.
It is my understanding from the unanimous assent on the first reading that this bill will face no obstacles or objections to passing. Simple in its construction, it promotes awareness and understanding of Fetal Alcohol Spectrum Disorder (FASD) within our school boards, and facilitates collaboration between school boards and local FASD Groups.
With the end of this Session of Parliament quickly closing upon us as we lead into an Ontario General Election, I am asking that you work together to ensure the speedy passage of Bill 191 through the legislative process, that it may become law before the House is dissolved for the 42nd Ontario General Election.
I look forward to your mutual consideration of this request, and your timely reply.
Sincerely,
Rob More
Copies: Sophie Kiwala, MPP
Randy Hillier, MPP
ynaqvi.mpp.co@liberal.ola.org
jim.wilsonco@pc.ola.org
gbisson@ndp.on.ca
randy.hillierco@pc.ola.org
amajetic@liberal.ola.org
2) House Leader Yasir Navqi met at the end of January with his constituents and listened to a passionate plea to expediate the passing of Bill 191 and appeared to be receptive. However, as you can see from the Hansard records Hansard Orders that under the Orders M191 is printed but not scheduled. Rowan's Law was chosen on Tuesday for second reading to be debated which also amends the Education Act to establish protocols and procedures related to concussions. I find it interesting that the Brain Injury Association of Canada Brian Injury Prevelence states that there are currently 1.5 million people in Canada living with an acquired brain injury which includes concussions, accident victims, stroke victims, oxygen deprivation victims and other conditions. We have established through recent research there are at least 1.1 million people in Canada impacted by FASD which doesn't include their caregivers. If Rowan's Law, a private member public bill looking to amend the Education Act AND controversial is being given priority, shouldn't Bill 191 be next?
3) 1,203 of you downloaded the template letter requesting Education Minister Naidoo-Harris to advocate for Bill 191. There are now over 10,000 of you currently reading this blog. Director of Education for Keewatin Patricia District School Board Sean Monteith and Director of Education Hamilton-Wentworth District School Board Manny Figueiredo have publicly stated their support for Bill 191. The CDSBEO, Hamilton, and four other SEAC's have publicly stated their support for Bill 191. The Minister of Education Special Advisory Committee has asked for a survey to be created to give them points of conversation regarding FASD and Bill 191. Every single group directly impacted by Bill 191 has voiced their support as well as every single House party. Why are House Leaders Navqi, Wilson and Bisson not scheduling this bill?
4) Martyn Beckett, Assistant Deputy Minister, Student Support and Field Services Division, Ministry of Education currently has been assigned the FASD portfolio for the Ministry of Education and is ready to go if Bill 191 is passed.
5) The Kingston Parent Action Group has secured a room at Queen's Park on April 11 with MPP Kiwala's help and financial support from Dr. James Reynolds of Kids Brain Health and Steve and Karen Catney of Alliance Youth Services and has invited all 107 MPP's to meet with them. They have secured the presence of several national FASD experts to network with them. The room has capacity for 75 people and the hope is to have it filled. After three days, there are already six MPP's with their staff who have confirmed their attendance. It is our expectation that Bill 191 will already be passed and we will be discussing next steps in regards to FASD Awareness.
Keep an eye out for Vanessa Hrvatin and the National Post. We should be seeing some stories on FASD coming out soon.
I am looking forward to this coming election. You should be thinking about showing up at your local MPP's debate and being the first to ask a question. Local papers always print the first couple questions asked and this is really free and easy publicity for FASD and its message.
I haven't heard any news regarding the MCYS applications as to which organization is responsible for distributing the money for the One Stop Hub, the Research Hub, or the Parent Support Groups. I have heard the Key Worker hirings have started and applications are being received across the province.
We are making unbelievable progress and each one of you should be commended for all you do. None of this is possible without your involvement. Please keep it up and make a difference.
1) The second reading of Bill 191 has been added to the orders of the day. It is currently waiting to be added to the schedule. This decision is made by the House Leaders led by the Honourable Yasir Navqi in consultation with MPP Jim Wilson and MPP Gilles Bisson. MPP Randy Hillier just shared with me the following letter advocating for this scheduling. MPP Hillier letter You will notice that he states this bill has a lot of support from MPP's and there is no reasonable explanation for why it should be delayed. I believe this is the first public statement made by an MPP in support of Bill 191.
I would encourage you to follow suit and be loud. Copy and paste the following letter into an email and send it to the three house leaders, MPP Kiwala and MPP Hillier, and your local MPP. You can also mail the email to the addresses listed at the top of MPP Hillier's letter.
February 23, 2018
Dear House Leaders,
I am writing to you today regarding Bill 191 Education Amendment Act (Fetal Alcohol Spectrum Disorder) 2017, introduced in the House by MPP Sophie Kiwala (Kingston and the Islands) on December 13, 2017.
It is my understanding from the unanimous assent on the first reading that this bill will face no obstacles or objections to passing. Simple in its construction, it promotes awareness and understanding of Fetal Alcohol Spectrum Disorder (FASD) within our school boards, and facilitates collaboration between school boards and local FASD Groups.
With the end of this Session of Parliament quickly closing upon us as we lead into an Ontario General Election, I am asking that you work together to ensure the speedy passage of Bill 191 through the legislative process, that it may become law before the House is dissolved for the 42nd Ontario General Election.
I look forward to your mutual consideration of this request, and your timely reply.
Sincerely,
Rob More
Copies: Sophie Kiwala, MPP
Randy Hillier, MPP
ynaqvi.mpp.co@liberal.ola.org
jim.wilsonco@pc.ola.org
gbisson@ndp.on.ca
randy.hillierco@pc.ola.org
amajetic@liberal.ola.org
2) House Leader Yasir Navqi met at the end of January with his constituents and listened to a passionate plea to expediate the passing of Bill 191 and appeared to be receptive. However, as you can see from the Hansard records Hansard Orders that under the Orders M191 is printed but not scheduled. Rowan's Law was chosen on Tuesday for second reading to be debated which also amends the Education Act to establish protocols and procedures related to concussions. I find it interesting that the Brain Injury Association of Canada Brian Injury Prevelence states that there are currently 1.5 million people in Canada living with an acquired brain injury which includes concussions, accident victims, stroke victims, oxygen deprivation victims and other conditions. We have established through recent research there are at least 1.1 million people in Canada impacted by FASD which doesn't include their caregivers. If Rowan's Law, a private member public bill looking to amend the Education Act AND controversial is being given priority, shouldn't Bill 191 be next?
3) 1,203 of you downloaded the template letter requesting Education Minister Naidoo-Harris to advocate for Bill 191. There are now over 10,000 of you currently reading this blog. Director of Education for Keewatin Patricia District School Board Sean Monteith and Director of Education Hamilton-Wentworth District School Board Manny Figueiredo have publicly stated their support for Bill 191. The CDSBEO, Hamilton, and four other SEAC's have publicly stated their support for Bill 191. The Minister of Education Special Advisory Committee has asked for a survey to be created to give them points of conversation regarding FASD and Bill 191. Every single group directly impacted by Bill 191 has voiced their support as well as every single House party. Why are House Leaders Navqi, Wilson and Bisson not scheduling this bill?
4) Martyn Beckett, Assistant Deputy Minister, Student Support and Field Services Division, Ministry of Education currently has been assigned the FASD portfolio for the Ministry of Education and is ready to go if Bill 191 is passed.
5) The Kingston Parent Action Group has secured a room at Queen's Park on April 11 with MPP Kiwala's help and financial support from Dr. James Reynolds of Kids Brain Health and Steve and Karen Catney of Alliance Youth Services and has invited all 107 MPP's to meet with them. They have secured the presence of several national FASD experts to network with them. The room has capacity for 75 people and the hope is to have it filled. After three days, there are already six MPP's with their staff who have confirmed their attendance. It is our expectation that Bill 191 will already be passed and we will be discussing next steps in regards to FASD Awareness.
Keep an eye out for Vanessa Hrvatin and the National Post. We should be seeing some stories on FASD coming out soon.
I am looking forward to this coming election. You should be thinking about showing up at your local MPP's debate and being the first to ask a question. Local papers always print the first couple questions asked and this is really free and easy publicity for FASD and its message.
I haven't heard any news regarding the MCYS applications as to which organization is responsible for distributing the money for the One Stop Hub, the Research Hub, or the Parent Support Groups. I have heard the Key Worker hirings have started and applications are being received across the province.
We are making unbelievable progress and each one of you should be commended for all you do. None of this is possible without your involvement. Please keep it up and make a difference.
Saturday, 17 February 2018
Best Practices, Challenges and Possible Solutions in Schools
I was recently asked by the Waterloo Catholic SEAC Chair to share my thoughts toward a survey centered around FASD conversations with the Ministers of Education Advisory Council on Special Education. I was also asked by a couple special education consultants to do the same for them.
Next week, I will provide an update on the status of the advocacy movement regarding Bill 191.
The following is Shelley and my thoughts on what a successful strategy to support students with FASD would look like.
Successful Practices -
1) Establish relationship and trust
2) Establish a safe person. We want to encourage the student to run to someone, never away
3) Check for comprehension particularly at the beginning of class
4) Frequent opportunities to move with heavy muscle usage
5) Use high interest topics and be flexible and accommodating in assessment
6) Use chunking and limit the amount of talking and information
7) Simple directions
8) Encourage class participation on their terms
9) Recognize the signs of anxiety and immediately seek to de-escalate
10) Give lots of body breaks including recess and gym
11) Seek opportunities to instruct in quiet, affirming settings
12) Make instruction visual and concrete
13) Maintain routine at all costs.
14) An educational assistant is a key partner in achieving success. They always need an external brain
Challenges
1) Educational assistant positions have been getting cut in the last four years and existing positions are getting stretched thinner.
2) Violence in schools are generally tied to mental health challenges. Educators are lacking in best practice training for supporting mental health challenges. Students with FASD, ADHD, Anxiety, PTSD due to trauma, Autism, and concussions can all have mental health challenges.
3) Violence is becoming prevalent in our schools today. On June 27, 2017, the first comprehensive survey on violence in schools was released. Almost 90% of Ontario teachers have experienced violence in the school, 85% say it is increasing and 80% say it is become more severe.
4) The province have also cut LHIN funding so our access to occupational therapy and speech language pathology is becoming much harder to access.
5) These neuro disabilities are frequently misunderstood. The child cannot choose between right and wrong behaviour when they are experiencing trauma and/or anxiety. They require an external brain to choose for them.
6) FASD is a lifetime disability. They will always be dealing with these challenges and will repeat poor decision making if put in unsupported environments.
7) There is now a provincial-wide shortage of young teachers. Every school board in this province is currently experiencing a lack of supply teachers which in turn creates more difficulties in maintaining routine for these students.
Possible solutions/future directions
1) Early intervention is so important. When effective strategies are learned and engrained early in controlled environments, these strategies will stick with them and the individual will go back to them. 2) Create an environment of acceptance and listening from the start. The problems always come when they try to deal with it on their own and hide it. When they use their team, they always find solutions.
3) When they are used to relying on others early, they will continue to rely on others for support through their entire lives.
4) All the needed tools already exist in the school system to support students impacted by FASD. The tools just need to be adapted. ABA consultants can help determine the anxiety triggers. Behaviour consultants can focus on finding self-regulation strategies and not reward systems. Occupational Therapists can develop sensory profiles and get the proper sensory tools. Speech-Language Pathologists and Psychologists can find the cognitive strengths and point out the things that create frustration.
5) Social and Emotional Learning Coaches need to be informed and educated on how to help these students and getting training from qualified counselors and/or psychotherapists who specialize in supporting the effects of FASD.
6) Assistive Tech people can support the deficiencies and create some level of independence. With technology, these students can follow their routine, they know when to start and stop, reminded to take their body break, refer back to assignment expectations, get extra help, work with visual mediums and low noise volume, and use relaxation programming.
7) Students impacted by FASD also require direct and specific digital citizenship education. They can’t filter the drama and amount of words that comes from social media. They need their external brain to help them navigate that information.
Other Comments Unless school boards are given the necessary tools to deal with the rising prevalence of students impacted by FASD, it is going to get worse. This is why Bill 191 is receiving so much support from Boards of Trustees, Special Education Advisory Committees, educators, teacher associations, parents and students across this province. Bill 191 is required for students impacted by FASD, necessary for students impacted by neuro disabilities and good for all students.
Next week, I will provide an update on the status of the advocacy movement regarding Bill 191.
The following is Shelley and my thoughts on what a successful strategy to support students with FASD would look like.
Successful Practices -
1) Establish relationship and trust
2) Establish a safe person. We want to encourage the student to run to someone, never away
3) Check for comprehension particularly at the beginning of class
4) Frequent opportunities to move with heavy muscle usage
5) Use high interest topics and be flexible and accommodating in assessment
6) Use chunking and limit the amount of talking and information
7) Simple directions
8) Encourage class participation on their terms
9) Recognize the signs of anxiety and immediately seek to de-escalate
10) Give lots of body breaks including recess and gym
11) Seek opportunities to instruct in quiet, affirming settings
12) Make instruction visual and concrete
13) Maintain routine at all costs.
14) An educational assistant is a key partner in achieving success. They always need an external brain
Challenges
1) Educational assistant positions have been getting cut in the last four years and existing positions are getting stretched thinner.
2) Violence in schools are generally tied to mental health challenges. Educators are lacking in best practice training for supporting mental health challenges. Students with FASD, ADHD, Anxiety, PTSD due to trauma, Autism, and concussions can all have mental health challenges.
3) Violence is becoming prevalent in our schools today. On June 27, 2017, the first comprehensive survey on violence in schools was released. Almost 90% of Ontario teachers have experienced violence in the school, 85% say it is increasing and 80% say it is become more severe.
4) The province have also cut LHIN funding so our access to occupational therapy and speech language pathology is becoming much harder to access.
5) These neuro disabilities are frequently misunderstood. The child cannot choose between right and wrong behaviour when they are experiencing trauma and/or anxiety. They require an external brain to choose for them.
6) FASD is a lifetime disability. They will always be dealing with these challenges and will repeat poor decision making if put in unsupported environments.
7) There is now a provincial-wide shortage of young teachers. Every school board in this province is currently experiencing a lack of supply teachers which in turn creates more difficulties in maintaining routine for these students.
Possible solutions/future directions
1) Early intervention is so important. When effective strategies are learned and engrained early in controlled environments, these strategies will stick with them and the individual will go back to them. 2) Create an environment of acceptance and listening from the start. The problems always come when they try to deal with it on their own and hide it. When they use their team, they always find solutions.
3) When they are used to relying on others early, they will continue to rely on others for support through their entire lives.
4) All the needed tools already exist in the school system to support students impacted by FASD. The tools just need to be adapted. ABA consultants can help determine the anxiety triggers. Behaviour consultants can focus on finding self-regulation strategies and not reward systems. Occupational Therapists can develop sensory profiles and get the proper sensory tools. Speech-Language Pathologists and Psychologists can find the cognitive strengths and point out the things that create frustration.
5) Social and Emotional Learning Coaches need to be informed and educated on how to help these students and getting training from qualified counselors and/or psychotherapists who specialize in supporting the effects of FASD.
6) Assistive Tech people can support the deficiencies and create some level of independence. With technology, these students can follow their routine, they know when to start and stop, reminded to take their body break, refer back to assignment expectations, get extra help, work with visual mediums and low noise volume, and use relaxation programming.
7) Students impacted by FASD also require direct and specific digital citizenship education. They can’t filter the drama and amount of words that comes from social media. They need their external brain to help them navigate that information.
Other Comments Unless school boards are given the necessary tools to deal with the rising prevalence of students impacted by FASD, it is going to get worse. This is why Bill 191 is receiving so much support from Boards of Trustees, Special Education Advisory Committees, educators, teacher associations, parents and students across this province. Bill 191 is required for students impacted by FASD, necessary for students impacted by neuro disabilities and good for all students.
Sunday, 11 February 2018
Managing emotional regulation
One of the topics that I have been hearing a lot of lately in the toughest month of the year is
centred around emotional regulation. When children impacted by FASD become extremely
stressed, they will find ways to release that emotion. Some of the methods that children may
use is swearing, hitting and kicking other people. As parents, it is hard to know how to deal
with that situation.
The first thing you need to be aware of is this is a method of communication and is not specifically
targeting you. I recently learned that we all have three muscles groups that we will use to release
that emotion. Those three groups are our jaw muscles, arm muscles and leg muscles. Just like
we have verbal, visual and touching learning styles, we all have a preferred method of the three
muscles groups. If your child prefers to run or kick when extremely angry, they prefer leg muscles.
If they punch or flap, they prefer arm muscles. And if they prefer to talk non-stop or yell, they prefer
jaw muscles. The key to this is which one actually de-escalates them when they do it. The other
groups will be for maintenance purposes only.
centred around emotional regulation. When children impacted by FASD become extremely
stressed, they will find ways to release that emotion. Some of the methods that children may
use is swearing, hitting and kicking other people. As parents, it is hard to know how to deal
with that situation.
The first thing you need to be aware of is this is a method of communication and is not specifically
targeting you. I recently learned that we all have three muscles groups that we will use to release
that emotion. Those three groups are our jaw muscles, arm muscles and leg muscles. Just like
we have verbal, visual and touching learning styles, we all have a preferred method of the three
muscles groups. If your child prefers to run or kick when extremely angry, they prefer leg muscles.
If they punch or flap, they prefer arm muscles. And if they prefer to talk non-stop or yell, they prefer
jaw muscles. The key to this is which one actually de-escalates them when they do it. The other
groups will be for maintenance purposes only.
Once you determine their preferred muscle group, start looking for the signs that tell you they are
escalating. Children will show behaviour that will tell you when they are struggling. Some behaviours
you may see include becoming quiet, leaving and hiding, breaking out in hives, their lips and/or hands
becoming tense, or holding their breath. This is where you really want to become the detective and
actively watch what is happening before they explode. When children are struggling, it is normally
due to being asked to do something or manage something which they can't do. Frustration will build
and eventually you get the explosion. If you see frustration starting, end the activity immediately and
go to a de-escalating activity.
escalating. Children will show behaviour that will tell you when they are struggling. Some behaviours
you may see include becoming quiet, leaving and hiding, breaking out in hives, their lips and/or hands
becoming tense, or holding their breath. This is where you really want to become the detective and
actively watch what is happening before they explode. When children are struggling, it is normally
due to being asked to do something or manage something which they can't do. Frustration will build
and eventually you get the explosion. If you see frustration starting, end the activity immediately and
go to a de-escalating activity.
As you begin the de-escalating activity, be very conscious of your own state of mind. Force yourself to
remain calm, breathe and use a quiet voice. Focus on showing compassion to your child. You want
to get close to them and get them to focus on you instead of the frustrating activity. If they are too far
gone to focus, ask them to count to ten with you. Counting to ten makes them engage their logical
brain and gives their emotional brain a chance to clear out the chemicals that are overwhelming them.
You may need to count to ten three or four times before they can start talking.
remain calm, breathe and use a quiet voice. Focus on showing compassion to your child. You want
to get close to them and get them to focus on you instead of the frustrating activity. If they are too far
gone to focus, ask them to count to ten with you. Counting to ten makes them engage their logical
brain and gives their emotional brain a chance to clear out the chemicals that are overwhelming them.
You may need to count to ten three or four times before they can start talking.
You can move to your de-escalating activity now. If you know arm muscles is their preferred muscles,
get a big exercise ball, hold it on the floor and tell them to start punching it. Use both arms and
remind them to breath while they are doing so. Take the ball and get them to bounce it as high as
they can. Get them to throw it at a wall as hard as they can. Do as many pushups as possible. For
leg muscles, get on the trampoline and bounce as high as possible. Sprint as long as you can. Go
swimming in the pool. Do as many squats as possible. For jaw muscles, chew on a hard chew toy,
practice doing the auction song, yell as loud as possible and talk as long as possible. The key is
remind them to do deep breathing in all these activities. You do this until they are completely
exhausted. Do not try to understand what escalated them at that time as we don't want to shame
them. Wait until the next day when they are calm and have had time to process.
get a big exercise ball, hold it on the floor and tell them to start punching it. Use both arms and
remind them to breath while they are doing so. Take the ball and get them to bounce it as high as
they can. Get them to throw it at a wall as hard as they can. Do as many pushups as possible. For
leg muscles, get on the trampoline and bounce as high as possible. Sprint as long as you can. Go
swimming in the pool. Do as many squats as possible. For jaw muscles, chew on a hard chew toy,
practice doing the auction song, yell as loud as possible and talk as long as possible. The key is
remind them to do deep breathing in all these activities. You do this until they are completely
exhausted. Do not try to understand what escalated them at that time as we don't want to shame
them. Wait until the next day when they are calm and have had time to process.
The elephant in the room, though, is what if they are too far gone and start hurting you or others.
First, remember to stay calm. Your child is communicating they need help and that requires you to
have control of the situation. It may take time but they will follow your model. If you get angry, they
will get angry. If you are calm, they will get calm. If you find yourself in a situation where you are
getting hurt, look into getting trained in Nonviolent Crisis Prevention Intervention. This is the method
the Ministry of Community and Social Services recognizes the proper form of prevention and use of
physical restraint. Most local colleges and/or service providers at times offer this course as well as
certain organizations.
https://www.mcss.gov.on.ca/en/mcss/programs/developmental/information/physical_restraints_training.aspx
crisisprevention.com recently posted an excellent article regarding how to use NVCI with someone impacted by FASD. https://www.crisisprevention.com/Blog/September-2015/FASD#.Wn5zsdSMmn8.facebookFirst, remember to stay calm. Your child is communicating they need help and that requires you to
have control of the situation. It may take time but they will follow your model. If you get angry, they
will get angry. If you are calm, they will get calm. If you find yourself in a situation where you are
getting hurt, look into getting trained in Nonviolent Crisis Prevention Intervention. This is the method
the Ministry of Community and Social Services recognizes the proper form of prevention and use of
physical restraint. Most local colleges and/or service providers at times offer this course as well as
certain organizations.
https://www.mcss.gov.on.ca/en/mcss/programs/developmental/information/physical_restraints_training.aspx
You want to get yourself informed about your child's signs and triggers of frustration. Once you
recognize the signs, the fear that your child may explode on you will leave because you will see that
they are communicating to you when they need help. If you are having difficulty recognizing the
signs, get help from a third party like a psychotherapist. My wife and I have benefited greatly from
having others giving us insights and perspectives we just don’t see. In all my years of teaching
special education, I have yet to meet a child who wouldn't give me some sign they were about to
explode. It may be quick and/or subtle, but the signs will be there. Remember, you are a great
parent and your child does love you no matter what they may say or do.
recognize the signs, the fear that your child may explode on you will leave because you will see that
they are communicating to you when they need help. If you are having difficulty recognizing the
signs, get help from a third party like a psychotherapist. My wife and I have benefited greatly from
having others giving us insights and perspectives we just don’t see. In all my years of teaching
special education, I have yet to meet a child who wouldn't give me some sign they were about to
explode. It may be quick and/or subtle, but the signs will be there. Remember, you are a great
parent and your child does love you no matter what they may say or do.
Saturday, 3 February 2018
Informal announcement regarding Key Worker implementation
Hello all,
The Lanark, Leeds Grenville FASD Work Group and the Kingston Parent Action Group has received notification that Kids Inclusive in Kingston who is the Special Needs Strategy Coordinating Agency for Kingston Frontenac Lennox Addington and Lanark Leeds-Grenville service deliveries has received the funding for the FASD Key Workers in these two service deliveries. They are currently developing the job description for these workers and hope to be hiring by April timeframe.
Obviously, I am thrilled to see that it appears that MCYS has separated the funding and has established Lanark, Leeds-Grenville as its own service delivery and therefore should have its own Key Worker. The draft job description includes the following:
It sounds like MCYS is giving this funding to the current 34 coordinating agencies across the province who they tasked with developing the special needs strategy across the province in 2014. I do know Update September 2016 - Representatives of the government Ministry of Child and Youth Services(MCYS) contacted OCTC as the Coordinating Agency (Ottawa, Prescott-Russell, Stormont- Dundas-Glengarry) in the summer and identified a few questions related to the pending CHEO-OCTC amalgamation and the partnership model that was outlined in our proposals. https://afchildrensservices.ca/en/about-us/news/ontario-special-needs-strategy-parent-update-september-2016/ The executive director for OCTC is Anne Huot who will be the primary decision maker for those service areas.
To figure out who your coordinating agency is, it will be an organization currently receiving funding from MCYS and is in charge of developing the special needs strategy in your area. It seems like your local children treatment centre is the most likely to be your coordinating agency. http://www.oacrs.com/en/memberdirectory If they are not, they should know who is the coordinating agency. I did find London has CSCN as their coordinating agency. http://www.cscn.on.ca/site/en/about/employment-opportunities I have found updates from the Special Needs Strategy and MCYS that after three years, they have now signed agreements from 29 of the 34 agencies and expect all agencies to begin implementation by Spring 2018. I also received confirmation that Karen Huber has been hired as the Key Worker for the Waterloo region through Developmental Services Resource Centre http://www.dscwr.com/
It also sounds like MCYS will be identifying another 16 positions to cover the areas with high needs in terms of FASD to be implemented by 2018-19. They are currently in process to make the determination of where the 16 high needs areas are located.
In closing, we need to get informed as to who these agencies are and get our message to them. It is clear that MCYS wants these service providers to be working in collaboration with us. After you introduce yourself, insist on finding out when they will be providing this service, when MCYS is providing the funding and when they will be getting feedback from their MPOC-20 survey.
Please feel free to continue contacting Minister Coteau at
The Lanark, Leeds Grenville FASD Work Group and the Kingston Parent Action Group has received notification that Kids Inclusive in Kingston who is the Special Needs Strategy Coordinating Agency for Kingston Frontenac Lennox Addington and Lanark Leeds-Grenville service deliveries has received the funding for the FASD Key Workers in these two service deliveries. They are currently developing the job description for these workers and hope to be hiring by April timeframe.
Obviously, I am thrilled to see that it appears that MCYS has separated the funding and has established Lanark, Leeds-Grenville as its own service delivery and therefore should have its own Key Worker. The draft job description includes the following:
FASD Worker Role
- Provide expertise on FASD, consultation and support to build seamless system navigation for individuals with FASD or suspected FASD and their families;
- Connect families to relevant services and other community supports/resources to support the inclusion and stability of children and youth in family, school and community life;
- Facilitate the exchange of information between relevant providers in the children’s services, education, and health sectors in each service delivery area;
- Explore flexible and innovative approaches for service delivery to meet the needs of the child/youth and bring forward any barriers to innovation that may exist;
- Build FASD capacity within Coordinating Agency and with other sector partners;
- Deliver FASD supports to children, youth and families;
- Educate parents, caregivers and school personnel about behavioural symptoms associated with FASD;
- Be knowledgeable and available to discuss the child/youth and family’s concerns;
- Participate in a provincial FASD Community of Practice;
- Participate in provincial FASD training sessions;
- Develop a support plan, not a formalized, cross-sectoral Coordinated Service Plan.
Key principles for FASD workers include:
•
Workers will provide services to children and youth up to the age of 18, including Indigenous children and youth, and young people between the ages of 18 and 21 who remain in school. They will provide direct
service to children, youth and families with FASD, including consultation and system navigation support, as required.
•
Formal diagnosis of FASD will not be required to access the services and support.
•
Not everyone served by FASD workers will receive Coordinated Service Planning.
Margaret Van Beers vanbeerm@hdh.kari.net is the Director of Kids Inclusive and will be the primary decision maker in the allocation of these funds and hiring of these individuals. She has extended invitation to the Chairs of LLG FASD WorkGroup, Erin Bertrand and Kingston PAG Rep. Len Whalen to collaborate with her in developing this implementation and get our input. Obviously, the key aspects we want to stress is the need for the Key Worker to be mobile and part of the community fabric. From a Lanark Leeds-Grenville standpoint, if the Key Worker is housed in Kingston, that will clearly not work. It is a 2.5 hour drive from Kingston to the north border of Lanark one way. The Key Worker needs to be working in a central location of Lanark, Leeds-Grenville. Considering we have no central newspaper, no TV station and two radio stations devoted to this area with over 1/3 of the area still not having cell phone reception, mass media advertising does not work here. It is face to face conversations with the key players in the community that will get the needed services to the needed people which again is why the key worker needs to be part of the community fabric and physically located here. It appears the Lanark and Leeds-Grenville Hub associated with Kids Inclusive is Lanark Community Programs in Carleton Place and Developmental Services of Leeds-Grenville in Brockville.
They have also hired CanChild from McMaster University to provide the MPOC-20 tool to get feedback from parents as to the effectiveness of their implementation. It will be the responsibility of all coordinating agencies who is responsible for the administration of getting this feedback from parents after implementation. It is extremely important that all funding is used exclusively for a FASD Key Worker. It is my hope that this funding will not be used for hiring a service coordinator, shared with autism supports, or admin costs within the organization. It is very clear these coordinating agencies are just getting infrastructure in place as of literally this month considering Kids Inclusive is currently hiring their service coordinators and London is currently taking applications this month.
It sounds like MCYS is giving this funding to the current 34 coordinating agencies across the province who they tasked with developing the special needs strategy across the province in 2014. I do know Update September 2016 - Representatives of the government Ministry of Child and Youth Services(MCYS) contacted OCTC as the Coordinating Agency (Ottawa, Prescott-Russell, Stormont- Dundas-Glengarry) in the summer and identified a few questions related to the pending CHEO-OCTC amalgamation and the partnership model that was outlined in our proposals. https://afchildrensservices.ca/en/about-us/news/ontario-special-needs-strategy-parent-update-september-2016/ The executive director for OCTC is Anne Huot who will be the primary decision maker for those service areas.
To figure out who your coordinating agency is, it will be an organization currently receiving funding from MCYS and is in charge of developing the special needs strategy in your area. It seems like your local children treatment centre is the most likely to be your coordinating agency. http://www.oacrs.com/en/memberdirectory If they are not, they should know who is the coordinating agency. I did find London has CSCN as their coordinating agency. http://www.cscn.on.ca/site/en/about/employment-opportunities I have found updates from the Special Needs Strategy and MCYS that after three years, they have now signed agreements from 29 of the 34 agencies and expect all agencies to begin implementation by Spring 2018. I also received confirmation that Karen Huber has been hired as the Key Worker for the Waterloo region through Developmental Services Resource Centre http://www.dscwr.com/
It also sounds like MCYS will be identifying another 16 positions to cover the areas with high needs in terms of FASD to be implemented by 2018-19. They are currently in process to make the determination of where the 16 high needs areas are located.
In closing, we need to get informed as to who these agencies are and get our message to them. It is clear that MCYS wants these service providers to be working in collaboration with us. After you introduce yourself, insist on finding out when they will be providing this service, when MCYS is providing the funding and when they will be getting feedback from their MPOC-20 survey.
Please feel free to continue contacting Minister Coteau at
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