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Have you heard about CADDAC’s ADHD Education campaign, ADHD Right to Learn?

Are you wondering why you should take a few minutes to contact your elected official and your Minister of Education?

Here’s Why

Elected officials believe that you, their constituents, do not care about ADHD and therefore question why they should care. We need to prove them wrong!

An e-mail or tweet from you will let them know that you do care that children with ADHD receive the special education support they need. 

Your elected officials and your Ministry of Education need to be informed that:

Attention Ontario Parents!

Our Students With ADHD Need You!

Take This Once In A Lifetime Opportunity To Make Your Views Known.

The Ontario Government, after years of advocacy work by the AODA and other disability organizations, has committed to enact an Education Accessibility Standard under the Accessibility for Ontarians with Disabilities Act (AODA).  An advisory committee, the K-12 Education Standards Development Committee, which includes representatives from the government and the disability community, was assigned to develop recommendations on what the Education Accessibility Standard should include.

The committee’s initial recommendations report, a 185-page report, was made public on June the 1st (summaries below). The public has been given until September the 2nd to send feedback on the initial recommendations. This may be your only opportunity to have your voice heard.  

The report’s recommendations are focused on eliminating barriers that students with disabilities (including those with ADHD) face in accessing education. Currently Ontario’s special education system is designed to only meet the needs of students who have a condition that falls within the Ministry of Education‘s definition of “exceptionalities”. ADHD is excluded from all 5 categories. This report recommends the removal of the term “exceptionality” and extending these rights to all students with any kind of disability as defined in the Charter of Rights, the Ontario Human Rights Code, and the Accessibility for Ontarians with Disabilities Act.

How can you make your voice heard?

There are two ways for you to send in your feedback:

  1. E-mail: educationSDC@ontario.ca (Strongly Recommended)
  2. Survey: Consultation: Initial recommendations for the development of proposed Kindergarten to Grade 12 (K-12) education accessibility standards | Ontario.ca.

 (The survey is confusing, will take some time to complete, asks questions on a wide variety of topics and will not allow you to choose your areas of focus.)

To assist you, CADDAC has developed Feedback on the Main Themes of the report, as outlined by the AODA, that we feel will affect students with ADHD.

You can:

CADDAC suggests that if you would like to comment on only some of the themes, these are themes of the most significance to students with ADHD: 1,2,4,5,6, 8 and 10.

For more detailed information please access the AODA Alliance’s 15-page summary, their 55-page condensed and annotated version  as well as their 49 minute video https://youtu.be/yjQgOjRTZJ8.

During CADDAC’s recent online conference I presented on school advocacy. At the end of the presentation many of the questions were let unanswered or briefly answered. Since many of these questions are common questions that CADDAC receives, I will be sharing the answers to these questions in several blog posts over the next few months.

Written by Heidi Bernhardt R.N.

Question 2

Will my Child with ADHD Receive an Individual Education Plan?

Please note that IEPs or Individual Education Plans are known as SEPs, IPPs, SSPs, and ISSPs in some provinces.

These are a sample of questions I received during my recent online CADDAC presentation on school advocacy.

Questions 

“We had a child psychologist do an assessment on her and she was diagnosed with ADHD.  The school has the report.  The principal said that ADHD doesn't get an IEP!?!?!?”

"The identification system can block a student with ADHD from receiving services if ADHD does not fit into a designated category - what are the possible designated categories for ADHD in ON?”

“I was told by my daughter's principal (in the Thames Valley District School Board) that she didn't qualify to get an IEP because ADHD doesn't get an IEP.  Is this accurate?”

“I have same issue - does not qualify for IEP - West Vancouver School District (BC).”

The short and very confusing answer is that it depends on which province you are in, the board and school your child is in and the good will and ADHD knowledge level of the principal and teachers in your child’s school.

Summary of Special Education Systems in Canada and ADHD 

This is a brief summary of the current situation across our provinces to help you understand your province’s system in context of all Canadian special education systems.    

Access post-secondary for information on the right to accommodations in this environment.   

If you currently reside in British Columbia, your child will most likely not have access to an IEP unless they have another disability that fits into one of BCs special needs categories. While BC’s Special Education Guidelines state that “ Individual Education Plan Order M638/95: sets out the requirements for school boards to design and implement individual education plans for students with special needs,” they define a student with special needs as: "A student who has a disability of an intellectual, physical, sensory, emotional or behavioural nature, has a learning disability or has special gifts or talents, as defined in the Manual of Policies, Procedures, and Guidelines, Section E.” The fact that ADHD does not fit into one of the defined categories is used to disqualify a student with ADHD from receiving an IEP. BC has indicated their intent to move to an inclusion system of identification but have not done so at this time.

Ontario has a similar system of identification using five defined categories, behaviour, intellect, communication, physical and multiple. ADHD does not fit into the criteria, or definition, of any of these categories. Therefore, schools and boards have been able to use this fact to refuse officially identifying students with ADHD as special needs students through an IPRC, or identification, placement, review committee. In December of 2011 a  Ministry Memorandum explained that a student with ADHD could be identified under any category if they have a “demonstrable learning needs”. Unfortunately, this term left room for interpretation because shortly thereafter the Ministry agreed that schools and boards have the right to set the level of impairment that would qualify a student for the designation where they see fit.

So, does a student in Ontario have the right to an IEP if they have an ADHD disability related need? The Ontario Human Rights Commission certainly believes that they have a right to accommodations and states that the Ministry leaves itself open to litigation if a student with ADHD is denied accommodations and support due to the categories of exceptionality. Access this blog for more details.

What is currently occurring in Ontario around this issue is total inconsistency across boards and even within the same board. The TDSB has stated that a student with ADHD may receive an IEP, if they are impaired, but will not allow an IPRC. This leaves the implementation of an IEP at the school’s discretion and also allows it to be pulled at the school’s discretion. Other boards seem to be accepting the Memorandum’s guidance and being more open to formally identifying students with ADHD. And other boards continue to refuse IEPs for students with ADHD. In our experience, one of the greatest indicators as to whether a student with ADHD will receive an IEP and/or special education services and accommodations in Ontario is the principal and teacher’s knowledge level of ADHD.   

For the other provinces who do recognize ADHD in a category or use a system of inclusion that does not require recognition under a category the implementation of an IEP is also hit and miss. As indicated previously, a great deal depends on how the educators working with your child interpret what they see as impairments caused by a disability. This is what will trigger more investigation and medical documentation to substantiate an exceptional learning need.

My advice to all parents across the country seeking support for their children with ADHD in our schools is to document your child’s impairments and struggles in as many ways possible. Gather medical documentation as well as examples of: academic marks and comments, work product, excess time or assistance required to complete assignments and tasks, and behaviour and social issues that are impairing your child. Do this even if your child is doing “alright” academically. Just because a child is bright and not failing does not mean they do not have a disability that required support and accommodations. It will then be up to you to use this documentation to convince your child’s principal that he/she is impaired to a level that warrants support. If your child is still being denied an IEP, I suggest that you move up the chain of command and speak with your board’s superintendent, preferably one for special education, but not all boards have this position. If you are in Ontario, I also suggest that you take advantage of the language on page 13 of Policy on accessible education for students with disabilities when speaking with your boards if they are continuing to deny access to an IEP.  

Once your child has received an IEP please know that you, as a parent, have the right to assist in the development of the IEP. Use CADDAC Accommodations Charts to assist you in this process.

Please feel free to reach out to me (heidi.bernhardt@caddac.ca) to report on your progress. I am very interested in being informed about the ongoing struggles to access support for students with ADHD.

Once you receive an IEP for your child, holding schools accountable for the implementation of an IEP is a whole other issue, but that will require another blog post, stay tuned.

If these issues are of concern to you, please stay tuned for our education advocacy campaign “ADHD Right to Learn” being launched soon.

We need all of your voices to help us effect change!

During CADDAC’s recent online conference I presented on school advocacy. At the end of the presentation many of the questions were let unanswered or briefly answered. Since many of these questions are common questions that CADDAC receives, I will be sharing the answers to these questions in several blog posts over the next few months.

Written by Heidi Bernhardt R.N.

Question 1

If one wants to consider a private school or another public school can you suggest any specific school types (Montessori, outdoor, etc.) that have a great history with ADHD kids?

This is a question that we receive frequently and unfortunately there is no easy answer. Yes, there are some individual schools (as well as some public schools) that demonstrate expertise in teaching neurodiverse kids, but they don’t fit into any one category or type of school. My advice to parents when looking at private schools, or considering changing public schools is to first learn as much as you can about how ADHD impairs learning, executive functioning and self and emotional regulation. Then build a profile for your individual child, outline their strengths and needs, and define where they are struggling. After that, research appropriate teaching strategies and classroom accommodations to assist with these impairments. Use CADDAC webinars, classroom accommodation charts and Teach ADHD Charts to do so.

Once you are informed, visit the schools you are considering in person and assess the environment. Is it somewhere your child would feel welcome and comfortable? Then, sit down with the administration for an in-depth conversation. Have them explain their understanding of ADHD. Do they develop IEPs? Ask them how they educate their staff about all neurodevelopmental disorders, their impact on learning and the appropriate teaching strategies and classroom accommodations. How do they evaluate their teachers’ knowledge and understanding of this information and their success in applying these skills?

At the end of these questions I would suggest you describe some specific scenarios that your child has experienced at school. Ask how they would react and solve these situations? How would they deal with a child that is not handing in assignments or a child that is reluctant to try new things? How about a situation were a child has reacted badly when triggered? This will allow you to get a good understanding about their knowledge level of ADHD and how they might handle situations that commonly occur with your child.

Unfortunately, I have spoken to many parents who have reported that although their private school spoke about understanding self-regulation issues during the interview, in practice, they were far better at working with children’s academic difficulties than dealing with what they saw as behavioural outbursts. They were often reactive rather than proactive during these situations and handled them much the same as the public system.    

Written by Heidi Bernhardt R.N.

During this year’s ADHD Awareness Month’s Campaign CADDAC shared ADHD facts from peer reviewed research. Our media release and bus shelter posters stated that ADHD is a serious mental health disorder that can significantly impact one’s mental health as well as physical health. Consequently, a few followers shared that they found the messages too negative. They would have preferred more positive messaging, fun facts about ADHD and more comments on individuality and neurodiversity. As a mother, grandmother and spouse of someone with ADHD I can certainly understand these feelings. We want others to recognize the individuality, strengths and other wonderful traits of our kids and family members with ADHD and not just the down side.

One of our Facebook contributors suggested that it would be beneficial for CADDAC to let people know why we think people should know these facts and what CADDAC’s next steps are after this campaign and bus shelter advertisement. I though these were very insightful questions that should have been addressed earlier, so here goes. 

Unfortunately, medical research data by its very nature always removes individuality. It looks for commonality, raw data and percentages that can be used to draw conclusions. I remember when I first found out that ADHD was a part of our family, about thirty years ago, I read medical texts written for clinicians because little else was available. Even with a background in psychiatric nursing I found these extremely depressing. Most of the research data made it sound like my child was heading for a life of failure, unfortunately that has not changed much. After working closely with ADHD experts through CADDRA while building CADDAC I quickly realized that ADHD information, even if basically the same, should most often be nuanced according to the audience.

But here’s the rub. If we don’t share the negative facts about ADHD openly and bluntly, ADHD will never be recognized as something that requires society’s attention. We still lack resources for assessment and treatment nation wide. Access to multimodal treatments, even when strongly backed by research, are costly and difficult to access. Many students with ADHD across Canada are still unable to access the supports they deserve in order to reach their potential. Employers still do not understand that ADHD is actually a medical disability and similar to depression should allow the right to accommodations.

We at CADDAC also find it hugely concerning that: large mental health organizations still offer very little information about ADHD; many mental health centres still do not treat ADHD; many medical professionals still know little about ADHD and those that do often charge over provincial coverage to diagnose it; and large mental health awareness campaigns still do not include ADHD in their messaging. 

Almost on a daily basis CADDAC is reminded that our decision makers and elected officials do not understand the serious consequences of ignoring ADHD. They really don’t think about ADHD at all because they believe that ADHD is of no interest to their constituents. You see, their constituents do not speak to them about ADHD unlike parents of children with Autism. 

So, this year CADDAC chose to put out some hard facts about ADHD. Through our ADHD Speaks campaign this October, ADHD Awareness Month, we are asking that people share those hard facts with their elected officials or others that needed to be educated on ADHD.  

We ask you, our followers, to stay tuned as we further expand our online advocacy campaigns this fall and into 2021. We plan to highlight specific advocacy asks in each campaign and will be requesting those personally or professionally impacted by ADHD to help us inform our elected officials that their constituents actually do care about ADHD.

Warm Regards,

Heidi Bernhardt

Written by Heidi Bernhardt R.N.

Click here to download the blog in PDF format.

All students returning to school this fall will be forced to navigate a new reality, but students struggling with ADHD and other neurodevelopmental disabilities will be exceptionally challenged. The skills that ADHD impairs such as the regulation of attention, activity, impulse, behaviour and emotion, as well as executive function are the very skills that will be challenged in this new environment.

Schools will be expecting children with self regulation and impulsivity issues, as well as impaired skills in remembering routines, planning, organization, and social interaction to follow complex instructions on what they should and should not do. Those in higher grades will also be expected to understand and follow new and varied schedules and conquer online learning with what looks like few additional resources. This new and confusing environment along with the added load on these students’ impaired skills will cause them increased stress resulting in more behavioural and academic issues.   

Anticipating this, parents are concerned. In some provinces they are being asked to make a decision about their child’s return to school with limited information. Parents want to know if their child will be provided additional support to ensure their safety. They wonder if their child will be offered additional understanding for their impairments, or be reprimanded, consequenced and ultimately excluded from their classrooms when their impairments prove too great? Of course, they hope for the latter, but some parents who have already experienced their school’s lack of understanding of ADHD impairments along with insufficient supports are rightly concerned. Their concern is so great that some parents are choosing to keep their children home. Some without the resources to do so, or others knowing that their child requires the routine and social interaction only school can provide, are opting to send their children and adolescents into the unknown.

What can parents do to help mitigate this unknown?

  1. Contact your child’s principal as soon as possible (all correspondence should be written in hard copy or sent by e-mail) to ask questions.
    • What will be your child’s support level when returning to school? Can you expect additional resources?
    • Will their environment change from what they are used to, and how?
    • Will the schedule to which they have become accustomed be altered and will it remain consistent after being altered?
    • Will your child’s IEPs and/or behavioural plan be expanded to cover these unique circumstances?
    • Will you be allowed to meet with the school to offer suggested strategies and supports – work with the school to expand the IEP or behaviour plan? 
    • How will you and the school routinely share feedback on your child’s well being and issues that arise? 
    • How will the school respond if your child finds it challenging to follow the expected rules due to their ADHD or other impairments? Is exclusion (asking your child to stay home) an option the school might consider? Knowing this will allow you time to decide how you will respond if this does occur. 
    • Has your school board developed a policy to deal with these circumstances. If so, ask the principal to send you a copy?
  2. If you are not receiving answers to your questions or you are concerned about the answers, contact your board’s special education superintendent (preferable) or your area superintendent.
  3. If you are not contacted in a timely manner or do not receive appropriate answers contact your school trustee, your local provincial representative and your provincial Ministry of Education. (Simply write one brief letter and copy everyone, stating you are concerned about your child’s return to school and require written answers to your questions)
  4. Access this Template Letter for text that you can simply cut and paste into a letter to the principal, superintendent, Trustee, Ministry or any provincial representative that you wish to contact. This is a very simple letter that you can use as is, or add to, as you see fit.
  5. You have the right to be informed about the environment your child will be going back to prior to making any decisions. You also have the right to expect your child’s needs to be met, within reason, of course. For instance, no school will be able to provide a personal EA for every student.   

What you can do to assist your child transitioning into this challenging environment?

Once you have obtained the information about the environment and situation your child will be entering, take steps to prepare them as much as possible.

  1. Review how their environment will be different this year. Discuss their worries and your concerns.
  2. Review any added rules they will be expected to follow. Do they anticipate difficulties, do you?
  3. Find ways to reiterate new rules frequently, practice and role play different scenarios that you and they anticipate will be difficult.
  4. If possible, teach your child the language needed to express when they are struggling. This is challenging for many children with ADHD, but teaching them a few simple phrases like “I’m having a hard time right now.” or “I need to get up and move.” can alert school staff that immediate intervention is required so a melt down does not occur.
  5. If you child has sensitivities or is anxious about wearing a mask, or seeing others in masks, have them practice wearing a mask and/or seeing family members in masks.

Prepare the school

Meet with the school to:

  1. Inform them of any issues that you expect may arise and strategies that you have developed with your child; 
  2. Inform them of triggers that increase your child’s stress and any tells (visual cues) that your child’s anxiety is escalating; 
  3. Inform them about your child’s language strategy (above). Stress that the staff will need to pick up on these messages consistently and act quickly for this strategy to work;
  4. Have this accommodation and any others that you have found work added to your child’s IEP; and  
  5. Discuss acceptable interventions for staff to apply once these messages are relayed. These should be added to the IEP or behavioural plan.   

The decisions made during any meeting should be followed up with a written summary. If this does not come from the school follow up with an e-mail to the principal listing the things that were agreed to in the meeting and when you expect them to be implemented. In this e-mail propose a date for a follow-up meeting to review how the strategies are working and if they need to be revised.

What You Need to Know

Autism disorder commonly coexists with ADHD with 20-50% of children with ADHD meeting the diagnostic criteria for Autism Spectrum Disorder, (ASD). Even when symptom levels do not meet the criteria for a diagnosis of Autism, we often see common symptoms of Autism present in children with ADHD. ADHD on the other hand is the most common coexisting disorder in children with Autism, 30-80% of ASD children meet the criteria for ADHD.

Research on this significant co-existence led the American Academy of Psychiatrists to revise their guidelines. Prior to 2013 physicians were not allowed to diagnose both disorders in the same child, however the new DSM 5 guidelines now allow for the dual diagnose ADHD and Autism.

More Facts:

Current Research

Some researchers have been pondering whether these two disorders might possibly be the same disorder with different presentations, but research to-date has been inconclusive. Genetic studies show some similarities, but brain imaging indicates both differences and similarities. Researchers are also questioning whether similar appearing impairments seen in the two disorders, such as attention dysregulation, may actually be caused for two different reasons.

At the same time, other researchers are pondering if we should be looking at a different way to think about mental and neurological disorders altogether. Rather then looking at the disorders through their diagnostic labels, we should be conducting joint studies looking at ways to categorize under common traits. An example is a study by the POND Network in Ontario, which looked at the inability of study participants with Autism, ADHD and OCD to read other people’s emotions by looking at their eyes. This has generally been thought to be an Autism trait, but researchers found the same inability in participants with ADHD. Therefore, children with ADHD would also struggle with impaired social functioning. Knowing this would greatly assist in initiating appropriate supports.

Why Should Parents of Children with ADHD Know About Autism?

One of the most important things we need to understand as parents of children with ADHD is our child’s unique profile. When we understand their individual set of strengths and impairments, rather than just a generalized list of ADHD symptoms, we can put appropriate supports and accommodations in place and make knowledgeable decisions about appropriate treatments. With the overlap of these two disorders many children with ADHD will also present with traits seen in Autism, even when they do not meet diagnostic criteria. Only after my grandson was diagnosed with dual ADHD and Autism, did I delve into the world of Autism literature more deeply. I was surprised how much this also assisted me in understanding some of those “more unique” traits of two of my three sons with ADHD.

ADHD, Autism and Schools

Another reason to understand the interplay of these two disorders is for the purpose of school advocacy. Although many of the learning and self-regulation impairments that students with ADHD experience are very similar to those of students with Autism, ADHD is not included in the categories of exceptionality in Ontario, British Columbia or Quebec. Ministries of Education use these categories to define students with special learning needs and approve additional resources. Therefore, students with ADHD although also impaired do not qualify due to their specific diagnosis. In a past blog post CADDAC summarized a recent Ontario Human Right Commission’s paper addressing this issue.

The situation has become so bad that physicians report parents coming to them asking for a diagnosis of Autism rather than ADHD because they know that this will get their child access to learning resources that these kids desperately need. Of course, this is not a discretionary choice on a physician’s part, but how sad that it has come to this.

Perhaps we all need to do a better job of educating our elected officials and Ministries of Education on the research and how greatly these two disorders actually overlap.


For more information please access these resources

Seven brave teens and young adults share their thoughts and experiences with ADHD in a new five part YouTube video series created by CADDAC.

Join Austin, Emily, Danni, Devin, Katelyn, Rebecca and Simon while they share some facts about ADHD, their thoughts, experiences and strategies they have found to be helpful.

Watch Understanding Adolescent ADHD Education Series

 

Download Media Release

CADDAC is asking people of all ages, including kids, to join the discussion and share their experiences, by text, audio or video. Tell us ONE thing you wish people knew about ADHD (yes pick just one) and submit it to us or share it on social media and tag us!

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It's easy to submit through our ADHDSpeaks Submission Form

Make a Submission

 

Animated Kids Series

The Centre for ADHD Awareness Canada, CADDAC has developed a set of questions aimed at parties and their candidates addressing some of the issues that families and individuals impacted by ADHD have expressed are of concern to them.

The purpose of this set of questions aimed at parties and candidates is to:

CADDAC is requesting that families and individuals impacted by ADHD ask one or more of these questions of their local candidates. During the campaign, candidates will canvass their constituents door-to-door, on the telephone, and at candidates’ meetings and debates. Any connection with a candidate is an opportunity to ask one or more of these questions to build relationships, and determine commitments for action.

Background

Access to timely assessment and diagnosis of any mental health condition is essential for the successful treatment of that condition. When left undiagnosed, ADHD frequently leads to increased health care costs, academic failure, increased mental health disorders and substance abuse, more unemployment, more involvement with the justice system and increased socioeconomic costs. Wait lists for assessments and treatment are long. Access to multimodal, recommended treatment, is difficult and expensive. In many provinces ADHD is still not recognized as the risk to learning that research tells us that it is. Educators are not trained adequately in ADHD teaching strategies and many still wrongly think that these children are just behaviour problems.

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