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.

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.

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.

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.

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.

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.

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.facebook

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.

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:

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

mcoteau.mpp.co@liberal.ola.org