Ministry of Education consultation

The Ministry of Education is now accepting feedback from the public regarding priorities within the school system.  I am certainly disappointed there is nothing listed regarding special needs in general or FASD specifically.  Please don't pass up this opportunity to make your voice heard.  Go to https://www.ontario.ca/page/for-the-parents to share your feedback.  I would suggest choosing the open submission method and list yourself as a stakeholder referring to your FASD support group as your organization.  Be sure and register to participate in a town hall call as well.

This is what I wrote for the eight boxes.
1) Our STEM instruction needs to get out of this language based instruction.  Our students living with FASD have amazing gifts in these areas but require a visual, verbal hands-on approach in an environment that is conductive to their learning.  Stop requiring them to learn math as another reading textbook and put it in a more application context.  Get them on the tools and learn it that way.

2) There needs to be collaboration between the school system and these needed job skills instead of the current silo situation.  Schools have no idea what employers are looking for and employers have no idea what schools are doing.  There needs to be an identification of what basic skills employers would like to see developed and schools focus on delivering them.  Coding needs to be included in the math curriculum and starts at the elementary level.  There needs to be more flexibility for high needs students particularly those living with FASD.  We need to see radically different environments that copy current workplace environments like Shopify or Google environments.

3) We spend the entire year teaching strategies to our children to enable them to experience success and then take it all away for the standardized testing to remind and shame them just how poorly they will do when we take all their supports away.  We also lower our school's overall score by giving them zeroes if the school chooses not to have them do this shaming exercise.  Don't require students with diagnosed intellectual disabilities like FASD to take the test or punish the school for exempting them.

4) There needs to be parent input as to what life skills are needed.  As the parent of children living with FASD, this is the most important thing to me and the schools teach none of it.  I am teaching all of it because the school's concept of lifeskills is way above what it actually means.  There also needs to be a public mindshift on debt in general.  Society today believes personal debt is acceptable but has no understanding of the impact it has.  Life Skills and financial literacy needs to be taught in a concrete manner.  We used to teach how to take care of a baby in a concrete manner, we needs to teach all lifeskills in real life ways.

5) There needs to be a secure storage place in each classroom.  All cellphones get placed in the storage place by a monitor at the beginning of class and removed at the end of the class.  There also needs to be more monitoring and education about social media.  For our children living with FASD, social media is the hardest and worst thing to try and teach. It always leads to our worst crisises.

6) The first and most important subject within the sexual health curriculum needs to be on alcohol and the impact it has on pregnancy.  There is no current discussion on Fetal Alcohol Spectrum Disorder and how it is only created by drinking alcohol during pregnancy.  Within mental health, FASD also needs to be discussed because these individuals are the most vulnerable in our society today to mental health challenges.  Through an understanding of how an individual with mental health challenges will behave, we can have open and frank dialogue without shame and stigma on how to best accept and welcome these individuals.

7) We believe using the model of the Ontario Patient's Bill of Rights would be an excellent way to start.  http://ondri.ca/sites/default/files/HSF%20Patient%20Bill%20of%20Rights.pdf  Change health care to education and patient to parent and use those 12 concepts.  Number 6 with having a third-party competent coordinator would solve a lot of problems that currently exist.  We are using our FASD Worker in this role.  We also believe in the 5C's of Advocacy.  Communication, Collaboration, Consistency, Creativity, and Clarity.  When both parties are committed to doing these five things, we have seen just how successful school can be for our children living with FASD.

8) Our current school system has very little recognition or understanding of how Fetal Alcohol Spectrum Disorder impacts 3% of our children.  They currently put them in impossible environments, ask them to do things they are not capable of, shame them when they fail, don't support them to succeed, punish them as soon as they act out and eventually kick them out where they are forgotten.  These injustices need to end and the Ministry should lead the way by having school boards learn about this disability and speaking with parents about how to best support them.  If they do so, everyone will see how FASD directly impacts mental health, math skills, financial literacy, sex-ed and every other item listed in this survey.

 I recently gave a presentation at the Rural FASD Support Group meeting and would invite you to watch it.  It is very long being almost 90 minutes but you might find it useful.  I focus on the advocacy methods Shelley and I use, the org chart and explanation for our Ontario schools and finish with a good IEP explanation for a student living with FASD.  https://www.facebook.com/robert.more.794/videos/1994012353998884/

On another note, you might want to check out the following site.  http://policyconsult.cpso.on.ca/?page_id=10258  The College of Physicians and Surgeons are accepting public feedback as to the new policies with continuity of care.  I think we have all been in the situation where we have had to explain to a new doctor what FASD is.  These policies are aiming at eliminating that.

To be aware of what other consultations are happening, please go to https://www.ontario.ca/page/consultations-directory

Provincial FASD News and DTC success!!

This week's blog is just focusing on various FASD news from the province including funding for support groups, SEAC appointments, MedicAlert Pilot Project and DTC info.

First, though, is the funding for support groups coming from Health Nexus.  The following announcement was sent earlier this week.  The webinar will walk you through how to apply and the deadline is Oct. 24.

We are pleased to announce that we are now accepting applications for the FASD Family/Caregiver support group funding!!

An informational webinar to assist with the application process has been scheduled for October 11, 2018 @ noon. 

Funding Details

• Up for $4,500 is available to create a new FASD Support Group or to further develop existing FASD Support Group activities across Ontario.
• Deadline for the first round of applications is October 24, 2018 at noon.
• Details of the second round of applications will be coming in early 2019. 
• The application package and funding details will be available in French shortly.

The below application materials can be found at https://en.healthnexus.ca/FASDSupportGroups

• Guidelines for Funding

• FAQs
• Funding Application Package

For additional information, please contact:

Angela Geddes, FASD Project Coordinator

a.geddes@healthnexus.ca

416-408-6868

1-800-397-9567 x 2292

It is important to note Health Nexus is tasked with developing new support groups as well.  The Rural FASD Support Network is applying for funding on behalf of the Smiths Falls FASD Caregiver Support Group and is hoping to be applying for support groups in the Lanark, Almonte, Kemptville and Winchester as well within the next year.  Each one of these groups is eligible for the full $4500 and size doesn't matter.  If you and a couple other people in your area want help getting launched, this funding can be used for that.  For us, child care and weekend meetings are non-negotiable.  It is just too hard to meet otherwise.  Finally, this funding is for now until March.  We apply again in April for another round of funding.

There was also an announcement sent out from Mary Cunningham of FASD One cunninghammary@rogers.com that if any individual wants to serve on an SEAC as a FASD rep, she will do the appointment.  Please note, though, if you are part of a current support group who is registered with Health Nexus, your local leader can also do the appointment.  Health Nexus is a provincially recognized organization and your registered support group is considered to be a local chapter.

Medic Alert just put out this announcement they are looking to expand their program across the province.  If you have a teenager, young adult or adult living with FASD, please consider applying for this program.  We constantly hear from our local first responders what a difference it makes for them when they know the individual they are helping is living with FASD.

MedicAlert FASD Pilot Program

MedicAlert Foundation Canada is a registered Canadian charity that proudly embraces our mission to put every Canadian in a position to benefit from high-quality health information at time of need. Since 1961, we’ve helped protect over 1 million Canadians.

MedicAlert is on their 3rd year of running our pilot FASD program.  This was created in November 2015 in partnership with the Anishinabek Police Service and Maamwesying North Shore Community Health Services to help those living with FASD in the community.  MedicAlert is working towards expanding this program nationally.This pilot program intends to achieve more equitable treatment for persons living with FASD by raising awareness among emergency first responders on how to approach these individuals as identified through their MedicAlert ID. As you know, FASD isn’t always recognizable to those who don’t know the signs.  With the FASD program, there’s an effective way to identify the subscriber, understand how to de-escalate a potentially volatile situation and immediately reunite the subscriber with family or caregivers.

Cost to join the program is FREE. This includes one year of MedicAlert service, the unique FASD ID, shipping, registration and tax. 

For customer service support, please contact Jennifer Cuthbert, Customer Service Manager of MedicAlert at 1.866.679.3217 ext. 1250.

Finally, some of you know that I had applied for the Disability Tax Credit for all three of my children and two were rejected.  After reapplying and being rejected again, we filed an objection to the decision to the Appeal Branch of the CRA.  We just received notice that both children have had their decisions reversed by the Appeal Branch.  Interestingly to me, the Appeal Branch is supposed to speak to our representative, in this case our accountant, but they did not.  They simply took the letter I wrote describing why I thought the decision was wrong and reversed it.  And they gave us six years instead of the normal three before we need to apply again.  I'm not going to share the letters I wrote as it is very personal to my son and daughter but I focused on the diagnosis they have according to the DSM-5, how it impacts their living, and how it affects their mental functioning.  I used this website which was extremely helpful.  http://www.fightingforfairness.ca/content.php?navID=8  I also wrote the letter using the advice that I needed to describe what life would look like as if my children had no support at all.  

The Rural FASD Support Network continues to grow in its advocacy.  Discussions continue with potential sponsors and garnering non-profit status.  We also received notice from MPP Hillier's office that they are continuing conversations with Minister MacLeod on our behalf and working toward getting an audience for us through the public consultation process.

The Mystery of Special Education in Ontario

In the field of Special Education, September is always the busiest month of the year.  The first month, the school admin are finalizing staff and class lists, resource teachers are speaking with classroom teachers and educational assistants about special needs students, classroom teachers are figuring out their students names and what their schedule looks like, and support staff are learning the students and how to best support them.  In my experience, nothing really gets finalized for the year until Thanksgiving weekend.  Students are still moving, teachers are determining IEP’s, and educational assistants are getting moved around. 

I am constantly reminded of how much dedication, passion and care my teaching colleagues possess.  I know lots of teachers who constantly work 55-60 hours a week.  They arrive an hour early, stay 30-60 minutes after, and do all their grading and lesson plans on the weekends.  They will have multiple phone calls every week, 200 papers to grade, 60 different lesson plans, and make a thousand decisions in a week.  And they do it with grace, compassion, and respect for every student in their class.  

I share this because collaboration with your school is always the best route to advocacy.  I know having to re-educate the school staff every year is frustrating but it is necessary.  When my wife and I are working with our children’s staff, we always have two key points in mind.  One, we will have one big ask that is the highest priority for the year.  This year, we want to see our son’s reading level increase by two grade levels.  We won’t determine how that is to happen.  We leave that to the teaching professionals to figure out.  Second, we only ask for things the school can deliver.  We will ask for a quiet learning environment, a resource teacher who understands FASD, board support people who understand ABA, behaviour and sensory needs, a classroom teacher who maintains routine and establishes relationship, admin who understand the difference between will and frustration, and regular honest communication between staff and us. 

There are two facts most people are not aware of regarding special education.  The first fact is special education in Ontario has not been revised since 1999.  When you consider in 1999, we were still institutionalizing our special needs children for the rest of their lives, we are using archaic procedures and policies as the basis of special education.  Most people don’t realize IPRC’s came about because schools used to deny entrance to special needs students.  The IPRC process came about to stop that practice.  That is why in the IPRC there are two things determined.  If the student is identified with an exceptionality, then they must be placed somewhere within the school system in the environment that makes the most sense.  However, the Education Act was amended in 2008 to eliminate the possibility of students being denied entrance due to an exceptionality.  And now, we have accessibility laws that take it even further.  This is why most school boards are easing out of the IPRC process and going straight to IEP’s.  There are now other laws that accomplish the exact same thing as an IPRC. 

The other thing most people don’t realize is IEP’s only impact grading.  The IEP determines how the student gets graded for their report card.  And grading is determined solely by the teacher and their professional judgment.  The principal, the resource teacher, any school board personnel can advise the teacher, but they do make the final judgment as to how the student will be graded. 

So how does educational assistant support get determined?  The Ministry of Education establishes that criteria.  The criteria is the students must have two of three particular needs.  They must have a medical need such as feeding, toileting, mobility, breathing supports, a safety need such as a lack of danger awareness, regular violence, regularly running away, or use of weapons, or a functioning need such as lack of social skills, communication, or intellectual challenges.  Interestedly, this criteria is exactly the same for Developmental Services and Community Living.  In other words, educational assistants are for individuals who live fully dependent lives.  Now there has been times in my children’s lives where they were fully dependent on us and their support structure to function.  During those times, an educational assistant was and is necessary.  However, the goal is always to eliminate the need for the educational assistant and have them live interdependent lives with safe places, good people, proper strategies and calm environments at a grade level they can do independently.

So what do you do if you can’t get the collaboration you need from the school?  The IPRC meeting can be used for that purpose as well.  The IPRC meeting can bring the principal, resource teacher, guidance counselor and classroom teacher together with you and your advocate.  During the discussion involving the identification, you can explain what FASD is, what it looks like and why it should be defined as a physical disability involving the brain.  During the placement discussion, you can talk about the need for resource teacher involvement and possible educational assistant support.  And if one of the members leave or aren’t present during the meeting, you can refuse to sign the paper and request a second meeting in writing and make it clear all three people need to be present.  Ideally, though, the school should respond positively to a simple verbal request to meet.  An IPRC request should be used with discretion.  If you have a concern about the class, speak directly to the teacher and express the concern.  If you feel you want to speak to resource or the principal because your conversation with the classroom teacher wasn’t fruitful, always do so.  In my opinion, an IPRC request should be used after 2-3 attempts with the classroom teacher, resource teacher and principal have been made and your clear and simple request is being dismissed.  In my experience, it loses its impact if it gets used frequently.

The school system is very large and very complex at times.  However, it doesn’t need to be.  Know your child, learn how to collaborate with your school and keep it simple.  Pick one goal at a time and focus on it.  Remember, it is not a sprint, it is a journey and even when things are bad, you are still gaining insight into long-term solutions.