Update: Although Bill 191 was not presented for 2nd Reading on February 20 there is still time – check back by Saturday for updated info and link for a petition!

We are at a critical point now advocating to get the Minister of Education to bring forward Bill 191 to amend the Education Act to include FASD for a second reading in the house. Ten days is all we have. If you haven’t written to the Minster and your local MPP, take some time this weekend to get your letters sent. This may be our only opportunity to get FASD the recognition it deserves and the accommodations our children  need and deserve.

We are not feeling very hopeful that the Minister will bring forward the Bill as detailed below in a series of correspondence between Mark Courtepatte, Co-chair of the Hamilton FASD Parent & Caregiver Support Group, constituents of Minister Naidoo-Harris and her office. If you care about this issue, please don’t leave it to others to write letters – the Minister needs to hear our voices on behalf of our children who, despite her office’s opinion they are being served, they are not!

Letter from Mark Courtepatte (Co-chair, Hamilton FASD Parent & Caregiver Support Group) to Minister of Education Naidoo-Harris.

January 26, 2018

Dear Honourable Minister Naidoo-Harris,
Re: Bill 191 – An Amendment to the Education Act to support FASD

We would like to firstly express our sincere congratulations for your new portfolio as Minister of Education and retaining your Ministerial responsibility for Early Years and Child Care. We also appreciate that in the past you had expressed your support for FASD including your recent statement at the Trillium Grant announcement for your riding:
“The Halton Fetal Alcohol Spectrum Disorder Collaborative provides important support for many Halton families facing challenges in their lives. This Ontario Trillium Foundation grant will help them expand their vital services and take care of the unique needs of local children and families affected by FASD. I’m so pleased our FASD community is getting this help.” – Indira Naidoo-Harris, MPP for Halton.

The intention of this letter is to also sincerely request that you confirm your support for FASD by supporting Bill 191 – an Amendment to the Education Act to promote awareness, understanding and support of FASD in our school systems and involve parents and Support Groups in the promotion. We also respectfully request your assistance by bringing this bill forward for the second and third reading before the next election writ is dropped.

We firmly believe that Bill 191 is not only critically important to your role as Minister of Education, it is also supports your role as Minister of Early Years and Child Care.
According to the John Howard Society of Ontario 1 …
• Fetal Alcohol Spectrum Disorder (FASD) is the most common type of developmental delay in Canada. There is increasing data to suggest that a disproportionate number of people in conflict with the law have FASD. Some researchers estimate the rate of FASD to be ten times higher inside Canadian prisons than in the general population.
• 95% Percent of people with FASD also have a mental illness.
• 60% Percent of people with FASD over 12 years old will be charged with, or convicted of, a crime.
• 55% Percent of people with ARND will be confined in prison, drug/alcohol treatment centres, or psychiatric institutions.

According to a recent Canadian study (Special Education of Children with Fetal Alcohol Spectrum Disorder): 2
• Children with FASD in the education system are most often recognized for their behavioral problems, and thus, are identified as difficult students to manage. Streissguth and colleagues (2004) reported that among a sample of individuals with FASD …approximately 53% of the adolescents with FASD had been suspended from school, 29% had been expelled, and 25% had dropped out. The most frequently mentioned learning problems were attention deficits (70%) and repeatedly incomplete schoolwork (58%; Streissguth et al., 2004).
• Children with FASD were more than three times as likely to repeat a grade, and more than nine times as likely to receive special education funding for special needs compared to the general population (Brownell et al., 2013).
We are also aware that in June 2017, Canada and Ontario signed the Early Learning and Child Care (ELCC) Agreement, as part of The National Early Learning and Child Care Multilateral Framework setting the foundation for governments to work towards a shared long-term vision where all children across Canada can experience the enriching environment of quality early learning and child care. We believe that Bill 191 is critical to ensure that FASD children encounter an enriching environment of quality learning supporting the ELCC Agreement. Every day countless children across Ontario are exposed to schools, teachers and Education Assistants who do not understand FASD, and use inappropriate teaching and support methods resulting in the children not achieving success in education, and many dropping out at an early age.

Our support group provides support to an estimated 5,200 people with FASD based on Health Canada’s low estimate of 1 per 100 or 10,400 to 26,000 people based on Health Canada’s 2-5% prevalence rate. 3

As the co-chair of a support group with so many children impacted by FASD, I know firsthand how difficult life can be for the children. However, I have also seen when collaboration, support and early intervention exist within the school, the children can truly succeed. When supports and early intervention were not in place at school, we had experienced situations where schools have called 911, children were handcuffed or chairs thrown through windows. However, when we have collaborated with the school board, CAS, DSO and other agencies, we have found success. We have learned it is through collaboration that we have discovered what types of support and early intervention the children need.

Our organization is frequently called upon to assist with children in schools, children experiencing challenges due to improper supports and understanding. When the children started receiving supports, understanding and accommodations, this is when we really started to see success. However, the biggest challenge we are currently facing in school boards across Ontario is a lack of understanding and corresponding strategy on how to best help the children. They do not fully understand how FASD impacts a child’s learning, behaviour and challenges which we know is unique from any other neurodevelopmental disability. This is why Bill 191 is so important. We need school boards across the province to begin the discussion on what FASD is, how to support it, and determine best practices from us, the caregiving experts, on how to implement it in their schools.

Please give all our Ontario families and children being impacted by FASD hope with the passing of this bill. I know that for all the children we support, hope and a better future is what we need right now.

I look forward to your advice and comments.

References:
1 John Howard Society of Ontario: FASD and the criminal justice system
2 Canadian study: Special Education of Children with Fetal Alcohol Spectrum Disorder
3 The 5,200 estimate is based on Health Canada’s 1% incidence and the Hamilton population of 520,000. According to Health Canada “… the precise prevalence of FASD in Canada is largely unknown, it is estimated that FASD occurs at a rate of 1 out of every 100 live births and prevalence may be as high as 2-5 per cent. FASD is estimated to be higher in some sub-populations …”

This is the Minister’s Office’s response to the Halton FASD Letter:

Thank you for your inquiry regarding Fetal Alcohol Spectrum Disorder and Bill 191. As you are aware, Bill 191 proposes to amend the Education Act by adding the following part:

(1) Every school board promote awareness and understanding of FASD, including best practices to support pupils who may have FASD and;
(2) every board shall facilitate collaboration with parents and FASD Support Groups in undertaking the promotion under subsection (1)

As you know, this Private Bill was introduced in the provincial Legislature on December 14, 2017. We do not know at this time the legislative schedule for the upcoming parliamentary session. Although you may already be aware, I would like to share with you some information about how the ministry is supporting students with FASD in our schools

The Ministry’s current policy is:

• The Students who have behavioural, communicational, intellectual, physical or multiple exceptionalities may have educational needs that cannot be met through regular instructional and assessment practices. Such students may be identified as exceptional pupils. The ministry sets out definitions of exceptionalities that must be used by school boards after determining that a student is an “exceptional pupil”.

• The ministry’s broad categories of exceptionalities are designed to address the wide range of conditions that may affect a student’s ability to learn, and do not exclude any medical conditions, whether diagnosed or not, that can lead to particular types of learning needs. The inclusion of some medical conditions in the definition of exceptionalities is not intended to exclude any other medical conditions that may result in learning difficulties, such as (but not limited to) Attention Deficit Disorder/Attention Deficit Hyperactivity Disorder, Fetal Alcohol Syndrome, and Tourette Syndrome. All students with demonstrable learning based needs are entitled to appropriate accommodations in the form of special education programs and supports.

• The ministry policy is that the determining factor for the provision of special education programs and/or services is not any specific diagnosed or undiagnosed medical condition, but rather the needs of individual students based on the individual assessment of strengths and needs.

• Although the ministry is responsible for policy that directs the allocation of funding to school boards, it is the responsibility of each school board to allocate funding for each school or program, according to its policy and priorities.

Bill 191 was carried on after its First Reading on December 13th 2017. If any additional information or update is released on Bill 191 is released, I will gladly forward it to you. Thank you.

Warm regards,

Joshua Houle
Office Coordinator/Scheduling and Constituency Assistant
Office of Indira Naidoo-Harris, MPP Halton
450 Bronte St. S., Suite 115, Milton ON
P: 905.878.1729
F: 905.878.5144
jhoule@liberal.ola.org
http://www.indiranaidooharris.onmpp.ca

This same form letter is being sent to constituents in her Halton riding.  Frankly the response is totally unacceptable!

To be polite … their letter lacks any new or real information, does not respond to the request for her support of Bill 191, repeats the Dec 19, 2011 Barry Finlay memorandum, and essentially says “we are just great, we do a lot to support FASD and we don’t know what the status of Bill 191 is but if it changes we will let you know”.  – Mark Courtepatte Co-chair, Hamilton FASD Parent & Caregiver Support Group

The Halton FASD Group is presently preparing a response to their letters. I will post the letter once it has been issued, but Mark points out:

As an overall comment, the response is disappointing. It essentially repeats info from the Bill, Ministry Policy for Special Education, and a Ministry of Ed Memorandum written 7 years ago (Dec 19, 2011) and makes no statement regarding the Minister’s support for the Bill. The link for the Dec 19, 2011 memo: 2011 Memo

More thoughts from Mark on the response:

The government is investing $26 million over 4 years.

On the surface the amount may appear to be considerable however this amount is negligible if you consider that FASD is caused by pre-natal alcohol exposure and that the government made $1.9 billion profit from alcohol (2016) and most FASD children were adopted from a government agency. For comparison, Autism received in excess of $500 million over 5 years, was not caused by a product that the government profited from, and the majority of the children were not adopted from a government agency.

We know that students with Fetal Alcohol Spectrum Disorder may require supports in order to succeed in school and further commented on the $26 million over 4 years and 6 initiatives.

Firstly, the spokesperson was incorrect to say that students “may” require supports in order to succeed. If he truly understood FASD he would realize that children with FASD “must” have supports to be successful in school. He also neglected to comment that not one of the planned 6 initiatives specifically relates to any enhanced FASD support or services by the Ministry of Education. Bill 191 would change this!

The FASD community strongly believe that the stated 6 initiatives will provide negligible assistance to people with FASD in Ontario and not one of the six initiatives includes any of the five themes in the Ministry of Children & Youth Services (MCYS) FASD Roundtable report.

One of the six initiatives that the spokesperson had not commented on is the hiring of 56 FASD workers to support 2,500 people with FASD (supporting less than 2% of the Ontario FASD population). We also estimate that the cost for the FASD workers would consume approximately 86% of the $26 million funding leaving approximately $7 per person per year for support which is not even sufficient to buy them a small coffee at Tim Hortons each month!

The stated 6 initiatives does not include any initiatives to enhance education for children with FASD. The Journal of Research on Special Education Needs stated that “it is important for school systems to adapt educational practice and policy to support the needs of children with FASD…”.

With regard to the spokeperson’s IEP statement:

The universal experience of FASD children is that the IEPs are totally useless if the schools do not provide awareness, understanding and proper support for FASD. According to a recent Canadian study (Special Education of Children with Fetal Alcohol Spectrum Disorder) approximately 53% of the adolescents with FASD had been suspended from school, 29% had been expelled, and 25% had dropped out. Clearly the research confirms that the Ministry of Education and school system is failing children with FASD. This is why Bill 191 is so important.

 As you know, this Private Bill was introduced in the provincial Legislature on December 14, 2017. We do not know at this time the legislative schedule for the upcoming parliamentary session.

NOT correct. Her office should know that the Legislative schedule indicates that Bill 191 is slated for the 2nd Reading on Feb 20, 2018 – however it will require Minister Naidoo-Harris to support the Bill and request that it be added to the docket for Feb 20th. Either her office is not familiar with the Legislative Proceedings for the Government of Ontario OR they are not being totally honest or forthcoming in their response.

It is scheduled: M191. Second Reading of Bill 191, An Act to amend the Education Act in relation to Fetal Alcohol Spectrum Disorder (FASD). Ms. Kiwala. PRINTED.   February 20, 2018 Orders

However, if there is not a Cabinet Minister to bring the Bill forward for reading, it will not go up for a second reading. Keep sending your letters! The Minister needs to know that Bill 191 is important and that she must support it.

We interpret the spokesperson not making a statement regarding this suggests that the Minister does not intend to support Bill 191. We also interpret the spokesperson’s statement “we continue to explore further ways to better support students who are living with FASD and their families” that they are doing nothing. Bill 191 provides a significant way to better support students living with FASD.

Minister Naidoo-Harris has said in the past that she supports FASD.

We believe that she now has a significant opportunity to prove to the FASD community in Halton and across Ontario that she really believes in supporting FASD or prove that her past statements were just empty political statements.

Bill 191 provides the opportunity for the Ministry of Education to enhance awareness and support for FASD in schools.

LCBO Profit $1.935 billion in 2016

Autism $533 million budget announcement:  Ontario autism program will soon include direct funding as option

MCYS FASD Strategy Announcement:  Provide funding for over 50 FASD workers to support approximately 2,500 Ontarians with FASD. Cost estimate details: 56 workers X $100,000 per year for salary, benefits, expenses and office overhead = $5.6 million per year. ** Note that the estimate excludes the cost of management, supervisors, etc for the 56 workers. $26 million over 4 years = $6.5 million per year. Less the $5.6 million for the FASD workers = $900,000 remaining / 130,000 people with FASD = $6.92 per person.

Special Education Study of Children with FASD: “…Streissguth and colleagues (2004) reported that among a sample of individuals with FASD, 14% of 161 school children and 61% of 250 adolescents and adults had disrupted school experiences. Approximately 53% of the adolescents with FASD had been suspended from school, 29% had been expelled, and 25% had dropped out. …”

Journal of Research on Special Education Needs

While the letter to the Minister from the Halton FASD is a fantastic example, and the counterpoints provide excellent statistics, I thought I would share the letter I sent by email on January 24. It is more an emotional plea for the Minister to bring Bill 191 forward.

Dear Honourable Minister Naidoo-Harris,

First, congratulations on your new portfolio. It is in that capacity, I am writing to you to support Bill 191 which would amend the Education Act to promote awareness and understanding of FASD, including best practices to support pupils who may have FASD. And further ensure every school board facilitates collaboration with parents and FASD Support Groups in undertaking the promotion of awareness and understanding.

MPP Sophie Kiwala was able to bring this Bill forward in December along with the request for the Province of Ontario to recognize International FASDay. Thank you so much MPP Kiwala! While the recognition day was passed, it is my understanding the second motion to amend the Education Act requires a cabinet minister to bring it forward for second and third reading. I, with others who are involved in the FASD community, are asking for your help in bringing this Bill forward for the second and third reading before the next election writ is dropped.

It is too late for my daughter. She went through a system for the most part unsupported. But it isn’t too late for those students currently in school and those yet to start.

Last January she met the Prime Minister and passed him a note asking for services. This year it would be great if the provincial government stepped up as an example to other boards across the country to provide a supportive educational environment. CanFASD estimates there are 1.5 million Canadians with FASD – most in the field feel 4% is too low and it is likely double. It’s time we recognize and support these individuals and their families and caregivers.

I adopted Nicole when she was eight – and although the CAS suspected she had FASD she was not diagnosed until 11. However even the diagnosis did nothing for her to receive support or understanding in our provincial education system. It failed her – as it has many other students and families.

Most teachers did not understand her behaviour. Most gave her consequences or expected her to learn from her mistakes, to leave her to make decisions she clearly did not have the skills to make, she was not provided with EAs or CYWs specific to her to help her navigate the social and rule bound world of education. She was expected to thrive in an environment that did not recognize, thereby not provide appropriate accommodations, for her disability. As a result, we struggled to get her to school and when she was there, keep her there. We changed elementary schools because the new principal did not understand or want to believe FASD. Routine and structure are important and moving schools was a big change but was needed.

I ended up having to quit a well paying job to stay home and support Nicole as from grade 7 – 10 she was removed from school at various points and taught at home because she was not getting the support she needed to flourish. It was only when she turned 17 and received a Developmental Disability diagnosis was she able to participate in the Life Skills and Learning program. However it was too little too late as this was her last year. She could have stayed until she was 21 but she had no desire to remain in a system that failed her.

Don’t get me wrong, there were some amazing teachers, principals and other staff who went above and beyond – but they could only do so much without Board support. She flourished under those few special professionals who collaborated with myself and Nicole’s support team. However without official recognition and intervention, every year we had to educate new staff, who didn’t believe by “looking” at Nicole she had challenges. It was only when she failed to meet their too high expectations that they realized that perhaps they should have listened to me or the professionals about the support she required. But the support wasn’t there for FASD.

I wonder how different her school years would have been if she received the support she needed. How different her life would have been for both of us if I had continued to work. Our potential was wasted.

I don’t want to see other children and families struggle like we did. I can’t speak for all Boards but there was a lack of understanding and specific strategies on how best to meet Nicole’s needs in our Board. FASD affects learning, behaviour and challenges unique from any other neurodevelopmental disability. This is why Bill 191 is so important.

We need school boards across the province to fully recognize FASD and how to support individuals with FASD and determine best practices in collaboration with us, the caregiving experts, on how to implement it in schools. We live in a rural area where services are few. We need equal and consistent awareness and collaboration across the Province. Our children deserve better. Our future depends on it.

I wrote last year on my blog about my 12 Wishes for My Daughter and FASD. One of those wishes was recognition of FASD in the Education System. I would love to see that happen in our Province before next Christmas. You can read my blog post here: it is a good snapshot of our life. Of Nicole’s life. 12 Wishes for My Daughter and FASD.

In closing, I’ll leave you with a plea from Nicole. The plea she made to the Prime Minister, which I hope our Provincial Members of Parliament and Cabinet Ministers will listen to and bring forward and pass Bill 191.

I found it fascinating the Minister thinks schools are already supporting students with FASD and a specific amendment is not needed for FASD. Here is a link to Day 30 of 99 Days to FASDay: Disrupted School Experiences one of the 99 Days to FASD posts I did last summer which provides details about my daughter’s school experience. This was written before I knew anything about Bill 191. Clearly the system failed her – as I’m sure it has thousands of others. We need to let the Minister and other politicians know the current educational system in Ontario does not accommodate children with FASD – no matter how much they wish to believe it does.

Don’t forget to CC your email to the following, and include your local MPP.

Premier Kathleen Wynne kwynne.mpp@liberal.ola.org
House Leader, the Honourable Yasir Navqi ynaqvi.mpp@liberal.ola.org
Opposition House Leader Jim Wilson jim.wilson@pc.ola.org
Third Party House Leader Gilles Bisson gbisson@ndp.on.ca
Minister Michael Coteau – MCYS mcoteau.mpp@liberal.ola.org
Minister Eric Hoskins – MOHLTC ehoskins.mpp@liberal.ola.org
Minister Helena Jaczek – M of SS hjaczek.mpp@liberal.ola.org
MPP Sophie Kiwala Parliamentary Assistant MCYS skiwala.mpp.co@liberal.ola.org
MPP Andrea Horvath ahorwath-qp@ndp.on.ca

Other suggested recipients could include: Irwin Elman, Ontario Advocate for Children, CBC News and TVO.

You can find a link to the template for the letter on my last blog post: Ontario FASD Community: We Need You!