Good IEP explanation

Hello all,
As promised, I finally recorded my presentation on what a good IEP looks like for a child impacted by FASD.

Please feel free to check it out at https://youtu.be/OgGK7yFn6jA  and share with others.

Rob

Best Birthday Gift Ever! MPP Kiwala's motion and bill

I know we are all talking about what happened Thursday, Dec 14 and I think I finally have a grasp of everything I saw and heard.

There were fifteen of us in the reserved gallery where the MPP's can come and speak with us.  During the debate, we heard the motion and corresponding statement by Sophie Kiwala, MPP who spoke so graciously and eloquently and really showed the passion she has over this issue.  We were then shocked to hear so many others speak in favour of the motion.  As can be seen from the transcript, six other members spoke in favour of the bill, but more importantly, all three parties were represented from those six members.  As a result, the motion passed with unanimous assent.  This was a big test.  All the other motions of the day were contested because they are being used for political wrangling and election preparations.  However, FASD was treated different.  Certainly everyone present at the assembly wanted to see this happen.  This also included MCYS Minister Michael Coteau and Education Minister Mitzie Hunter based on the types of things they were doing on the floor while the debate was going on.
After the debate was finished at about 2:30, we had a long break because all motions needed to be debated first then the votes come.  So the vote was at 4:30.
During the break, though, Sophie joined the fifteen of us and we had some discussions about next steps and had some pictures taken.  If you go to her Facebook page, https://www.facebook.com/SKiwala/ and click on the large group photo, you will see Education Minister Hunter joined us on the far left hand side.
Sophie then went on to tell us the bill FASD Bill also went through first reading.  However, it is important to note only 6% of private member bills have passed in the last 10 years in Queen's Park.  The reason is as follows:  MPP Kiwala, as a backbencher and not a Minister, only gets one day every 17 months to present motions and bills.  By the time she would get to present it for second reading, we will have an election and the bill will disappear and have to start all over again.  However, because she tabled it, any minister can pick it up now and present it.  But it is still a tight time frame.  The Assembly comes back on Feb. 20 and can start presenting bills again.  Sophie did tell us, though, she thinks an election may be called for June which means the writ is dropped in May where everything stops.  This bill must go through second and third reading between Feb 20 and May 1.  And the most likely person to do this is Education Minister Mitzie Hunter of Scarborough.  Sophie has had several conversations with her and MPP Hunter did show support, but she has a challenge as well.  Sophie did try to have the bill be done as a Education Policy/Procedural Memorandum which doesn't require assembly assent but was turned down.  The Ministry of Education is requiring it to be done as an amendment to the Education Act which is extremely ambitious.  As of right now, the second reading is not scheduled and there is no current discussion to schedule it.

So what can be done?  Because Len Whalen and I stayed right to the end for the actual vote and then by happenstance went home on the same train as Sophie, she gave us several pieces of advice on how to advocate now.

1) Be personal!  Sophie mentioned for her it was hearing the stories of three constituents at Kingston that got her started on this path for fighting for us.  She also went on to say the biggest highlight of the day for her was getting to meet Savanna and her dog Sasha from Hamilton.  Brian and Bonnie from Scarborough of FASworld has been fighting the good fight for a lot of years now and have done a great job educating their MPP, Education Minister Hunter.  I can not stress enough the impact twenty-five personal stories would have on her.

Everyone needs to be writing to MPP Hunter and specifically tell her how you know early intervention in the schools is so needed in order to make such a positive impact on those children impacted by FASD.  Be sure and send this same letter to your local MPP as well.

2) Sophie is working on getting us an advocacy day at Queen's Park.  At this day, every one of our organizations get a table where we want to be giving away a short pamphlet of information about FASD and a give-away like a pin or logo.  We will have an opportunity to make an impression on every single MPP in the assembly through this day if they are willing to come.  She is working on getting us a day around the April/May timeframe.

3) If you have influence on your local SEAC committee, encourage them to send a letter of support for the bill to Education Minister Hunter.  If she sees there is support for this bill from both parents and school boards, this will make a big impression on her.

4) Sophie also communicated how excited she was to find out that Vanessa Hrvatin is now writing for the National Post regarding FASD.  She also sees this as one more way to get the province talking about this issue.

This is the first time I have ever met Sophie and her staff face to face.  I was so impressed with Anna, her Legislative Assistant amajetic@liberal.ola.org.  She was such a great host and brought a lot of energy and enthusiasm to the proceedings.  It is very clear to me that Sophie is an amazing collaborator, has navigated in a very short timeframe through multiple obstacles, and has a clear strategy on how to champion our cause.  She did make it very clear she needs and wants us to continue advocating.  She has managed to open a door but it is up to us to push through it.  We do NOT have cabinet support yet.  It is clear the MCYS, the Attorney General, and the Education Minister do believe in what we are doing but there are still obstacles holding them back. 

Let me finish by saying a huge thank you to Sophie and her staff.  Sophie specifically told me she wants us to be talking to her through Anna.  She really has a heart for us and I'm pretty sure she was crying when I gave her the picture of the five of us on our first day as a family.  She truly does want to hear from us and loves the encouragement we are giving her.

National Post article on FASD

Vanessa Hrvatin, formerly of the Kids Brain Health,  won a fellowship with the National Post and was able to choose a topic. She “..has chosen to pursue the topic of Fetal alcohol spectrum disorder (FASD), including how FASD patients are being diagnosed and cared for across the country....” You can read more below. It appears the fellowship will last a year.

http://www.postmedia.com/2017/11/21/postmedia-announces-2018-michelle-lang-fellowship-in-journalism-winner-vanessa-hrvatin/

She just published her first article looking at prevention versus treatment.

http://nationalpost.com/health/scientists-want-to-develop-drugs-to-reverse-fetal-alcohol-syndrome-but-will-it-reduce-prevention-efforts


I would encourage you to comment about her article for two reasons.  First, the comments she is currently getting about this article are very ill-informed.  Second, and more important, we want the National Post editors and other major newspapers to know this is an important issue and needs to be talk about on a national forum.  If she keeps getting lots of comments, that will get people's attention.

Supporting MPP Kiwala Motion

We have clarification now on what is happening Thursday.  MPP Kiwala wants us to send letters of support from each FASD organization supporting the motion to have a day recognizing FASD in Ontario and the need for it.

She is also tabling a private member bill specifically related to education which we will receive a copy of on Thursday.  If this bill is similar to what we saw earlier, it will make a huge difference in our educational system.

Feel free to use the below link with your organization's logo to show support that MPP Kiwala can use during the debate.

https://docs.google.com/document/d/1eGNG4iLUA4BkxK9pj7dhNFW6NTz7Y8ElKeoP2ImgDzE/edit

Dear Rob,

Thank you again for all of your support! We are very much looking forward to seeing you both at Queen’s Park on Thursday, Dec 14^th. Please see more details below.

On this day, MPP Kiwala will be debating her Motion to Recognize Fetal Alcohol Spectrum Disorder Day in Ontario. These proceedings will take place in the afternoon.

Please note that this week, MPP Kiwala will also be introducing a Private Member’s Bill (PMB) , which will focus on education specifically. This PMB will not be debated, but our office can provide you with a copy upon your arrival on Thursday. Please note that the Motion and Private Member’s Bill are two separate pieces of legislation. The PMB will be submitted on a separate date and will not be debated.

Itinerary for Thursday’s debate of MPP Kiwala’s Motion to Recognize Fetal Alcohol Spectrum Disorder Day in Ontario:

Arrival

-12:15pm at the Legislative Assembly of Ontario, located at 111 Wellesley Street West, Toronto ON M7A 1A2

For a map of the grounds, please visit: http://www.ontla.on.ca/lao/en/coming-to-queens-park/location-and-parking/

-Enter through main entrance on South Side. Anna will be meeting visitors in front of the main staircase on the first floor

*Please ensure that you have a piece of government issued ID

*Please inform Anna if you are interested in attending Question Period from 10:30am-12:00pm

Afternoon Proceedings

-1:00-3:00pm

-You will be escorted to the Members Viewing Gallery upon arrival

-MPP Kiwala’s debate will take place from 1:00-2:30pm (approx.)

-Following the debate at 3:00pm, we will meet at the main staircase where you entered for a group photo

*please note that cell phones must be turned off or left with security during the proceedings

MPP Kiwala encourages you to share a letter of support (see attachment) that she can provide to her fellow MPPs to reinforce the need for this Motion. I have attached a sample letter of support for your convenience, however, it would greatly appreciated knowing how your organization would uniquely benefit from this legislation. We request that your letter be printed on letterhead and that you allow MPP Kiwala the privilege of using your organization’s logo when promoting my Bill.

If you have any questions, please do not hesitate to contact our office at 416 326 0820. Kindly also inform us if you require any assistance with respect to accessibility.

It would also be most helpful to have your contact information for the day’s activities.

We look forward to seeing you!

Best,

Team Kiwala

MPP Kiwala FASD Education Bill

MPP Kiwala announced today she will be bringing a private member motion to the floor of Queen's Park for debate on Thursday, December 14 at approximately 1pm.  I have seen a draft version of this motion and it is focused on providing much needed supports in our educational system for children impacted by FASD.  MPP Kiwala did draft it in consultation with Education Minister Mitzi Hunter.  It did go to the Premier's desk for study and got sent back.

However, in the past ten years, only 6% of all private member motions have passed in Queen's Park.  MPP Kiwala is asking for us to encourage our MPP's to support this motion and attend the debate to clearly show our resolve.

If you can attend, please RVSP amajetic@liberal.ola.org by this Monday, Dec 11 5pm.

If you can't attend, please contact your MPP using the link below to encourage them to vote in favour of this bill.  

This is our moment to rise up and clearly tell our provincial government we are here.  The fact MPP Kiwala has to bring it to Queen's Park as a private member motion means MPP Coteau of MCYS and Premier Wynne are still dismissing us.  Please send a message to all three parties we see this as an election issue.  Are they willing to represent us in our work or not?

I am encouraged that MPP Kiwala and Education Minister Hunter are still forging ahead with it.  Let them also know how much we appreciate their advocacy for us.

http://www.ontla.on.ca/web/members/members_current.do?locale=en

Good Afternoon,

Member of Provincial Parliament for Kingston and the Islands, Ms. Sophie Kiwala, cordially invites you to attend the Legislative Assembly of Ontario for the reading and debate of her Private Member’s Motion, to take place on Thursday, December 14^th at approximately 1:00PM.Details of the reading and debate can be found below. More information regarding the motion will be forthcoming. 

Please contact amajetic@liberal.ola.org for any questions. If you are interested in attending the debate, please RSVP by Monday, December 11^th by 5:00PM. MPP Kiwala would be most pleased if you could join her for the afternoon.

Warm regards,

The Office of MPP Sophie Kiwala

Interpreting FASD diagnostic practices and treatments

On December 14, 2015, the Canadian Medical Association Journal published an article called "Fetal Alcohol Spectrum Disorder: A guideline for diagnosis across the lifespan" which was a revision by the same authors to an earlier article published in 2005.  While these guidelines are not necessarily required to be followed by medical practitioners, they are the most widely used and accepted.  These Canadian guidelines are a little different from other countries primarily because the medical community isn’t currently agreeing on the meaning of their vocabulary.

These new guidelines state that if a person has confirmation that the mother consumed alcohol during the pregnancy, and shows three impairments in the areas of brain development, motor skills or movement, cognition or general thinking, language, academics or school grades, memory, attention, executive functioning which is basically planning and organization skills, mental health and social ability, they can be diagnosed with FASD.  If the child shows from baby pictures they had narrow eyes, a flat ridge below their nose and a thin upper lip, they are diagnosed with FASD with sentinel features.  If they are missing one of those three physical features, then it is without sentinel features.  The new guidelines eliminated pFAS, FAS and ARND as diagnosis terms and it is simply called FASD now.  It also added mental health as a new impairment and eliminated growth rate.  It establishes that a psychologist, speech-language pathologist, and occupational therapist assessments are needed to determine if three of the ten domains exist.  It then requires a medical practitioner familiar with FASD characteristics to make the diagnosis.  It strongly encourages using the multi-disciplinary model to properly diagnosis and support the person impacted by FASD.

You should also be aware of practices to avoid.  Because these are only guidelines, any medical practitioner can diagnose. Within our current medical culture, there is controversy and disagreement as to how this condition should be diagnosed.  The DSM-5 which establishes the guidelines for psychologists also give them the ability to diagnose neurobehavioral disorder associated with prenatal alcohol exposure under which FASD does fall.  However, a recent study published by the same CMA Journal, shows the DSM-5 guidelines only captures about half of the FASD diagnoses these new guidelines diagnose. http://cmajopen.ca/content/5/1/E178.full  The importance of using a multi-disciplinary approach to diagnose is incredibly important.  Because multidisciplinary teams can be rare depending on where you are located, you may need to become your own team.  This situation existed for us.  When we suspected our children had FASD, we got the diagnosis and support as soon as possible.  First, we went to a pediatrician who understands what FASD is.  Next, we got any type of documentation that stated there was a strong possibility that the mother may have drank during the pregnancy.  In our case, it was a CAS social worker who gave us a letter making that statement and who gave us frontal head shot photos from age six months to 6 years.  At age 3-4, we got a speech-language assessment with occupational therapy recommended.  At age 4-5, we got the occupational therapy assessment with a sensory profile as well.  With this, we started working with the school and got a special education plan and keep copies of all their documentation.  In grade 3, we got a neuro psychological assessment.  A psychological educational assessment will also work.  With all this documentation, we went to our pediatrician and ask for the referral to an appropriate medical practitioner. 

While there isn’t any realistic cure for FASD right now, early intervention is important.  A common story today is people impacted by FASD getting diagnosed when things get bad.  This may include attempting suicide, getting arrested, employment challenges, gang participation or being in abusive relationships.  These are common outcomes when the individuals aren’t being provided the necessary supports with established routines.  When you have early intervention, you are no longer guessing why these individuals are behaving in the way they are.  You can start teaching coping strategies, discovering triggers, implementing supports, and establish relationships at a time when the child will be receptive to receiving them.  If you are trying to establish these things with an adult, you are now dealing with low self-esteem, distrust, depression and shame at the same time.

One exciting new development in this area was recently announced by UBC genetic researchers.  They have discovered that people impacted by FASD have DNA with unusual methylation. Basically, their DNA doesn’t work properly.  However, there are several conditions that can have this unusual type of DNA so they can’t use it yet for early detection.  Other researchers have been able to identify certain DNA patterns that normally means a likelihood to develop certain types of cancer.  It is the hope they will be able to do the same for FASD.  Research is also showing healthy living makes a huge impact as well.  Eating right, sleeping well, getting lots of exercise and having the right vitamins such as iron will enable the person to manage the other aspects of their lives much more effectively.

As to treatment, the objective is to manage the condition.  Because the condition is a spectrum disorder, each individual need supports particular to them.  While medication seems to have widely varying effects, proper counseling should certainly be used.  Cognitive Behaviour Therapy should be avoided, though, because it only increase shame.  Self-awareness is a powerful tool for the individual because most of the time they are aware of how they are coping.  They just can’t do anything about it on their own.  Knowing what they are good at, being able to advocate for themselves, understanding what their triggers are and how to cope with them, discovering what their best methods of learning are and realizing and accepting support in their areas of need are all necessary components for success.  They may need people like a financial trustee, a system navigator, a house cleaner, an understanding employer, a supportive church and a close group of friends watching out for them.  While it is currently rare to meet an adult impacted by FASD to have received early intervention and current supports, when you do meet one, you will see them living interdependent and fulfilling lives. 

You may hear people talk about potential treatments like neurogenesis treatments and neuroplasticity.  I would strongly caution you about these treatments.  The basis of these treatments is to take the brain back to an earlier state.  It works for stroke victims because they had a properly working brain earlier.  However, with FASD, there was never an earlier properly working brain. 

FASD is not to be feared.  I see daily that within my family and other local families that individuals impacted by FASD can be happy, successful and interdependent.  With awareness, advocacy, education, support, healthy living and faith, there is hope.