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.
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.
“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 (email@example.com) 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!
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.
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.
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.
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.
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
Although I was well aware of the OHRC’s new policy I watched both training session videos from start to finish. I strongly recommend that anyone interested in the issue of accessible education in Ontario for students with ADHD, or any other disability, view these videos. They take a total of 85 minutes to watch. Cherie Robertson, OHRC Senior Policy Analyst and the author of the paper, does a great job of explaining the points covered in the paper. She also answers questions from the audience. ADHD is specifically discussed two separate times during the presentation.
These are my important take always from the presentations:
The videos can be accessed on YouTube: http://bit.ly/2FAueV0
Over the past several months CADDAC has been receiving increased calls from families and individuals with ADHD upset that they have been denied the Disability Tax Credit (DTC). It seems to have become more difficult, if not impossible, for those with neurodevelopmental disabilities to be approved for this government benefit. While we encourage those who are applying to include detailed information on how ADHD causes continuous impairment, providing specific individualized examples and outlining additional financial hardships, even when this is done they are most often denied.
A recent article in the Globe, https://www.theglobeandmail.com/opinion/article-the-cra-makes-life-more-difficult-for-people-with-disabilities/ by Andre Picard does an excellent job of summarizing the issues of inconsistency, unfairness and a lack of transparency. Government personnel are vetoing the decision of medical professionals who have deemed their patient to be “disabled” enough to qualify.
Mr. Picard also points out that those with an obvious physical disability have a much better chance of being approved for the DTC. This makes perfect sense when you understand that those making the decision on eligibility have no additional training or knowledge of neurodevelopmental or mental health impairments and would have the same lack of awareness and understanding of these disabilities as the general public. Certainly everyone with ADHD would not and should not qualify for the DTC since impairments caused by ADHD are on a continuum, however those with ADHD on the more sever end of the spectrum certainly should. For change to happen those with these invisible disabilities need to let their voices be heard. Unfortunately the very disabilities for which they require support are the ones that often impair them in their quest to be heard.
This past weekend an important opinion piece, written by several prominent BC ADHD experts was published in “The Province”, a daily newspaper published in BC.
The piece entitled, “Opinion: ADHD is a real brain disorder requiring treatment, despite what some say” opens with a request that BC medical colleagues demand that the Therapeutics Initiative, which is government funded in the amount of 10 million dollars, be de-funded again. The opinion piece goes on to state that the report, or therapeutics letter, created by unnamed experts, most likely none of which are paediatricians or psychiatrists, cherry-picked research and grossly misrepresented ADHD evidence to support their ill-intentioned claims and prejudices. The ADHD experts equates the Therapeutic Initiative’s report, which questions the safety and validity of ADHD treatment, to a psychiatric version of the vaccination debate.
The comment piece outlines the abundance of current ADHD research and the impact of untreated ADHD and states that, “The increased use of ADHD medication in BC is heartening because it suggests that more children are being diagnosed and treated. However, with only four per cent of B.C. children receiving treatment, ADHD is still under-diagnosed and often goes untreated.” While the piece points out that medication is not required by everyone with ADHD, it also states that large review studies have shown and continue to show the benefits of treating ADHD with medication. Furthermore, these medications have been prescribed for more than 80 years.
It is extremely disheartening for those of us who work in the field of ADHD and for those who themselves have ADHD or family members affected by this disorder to be required to continually justify the diagnosis and treatment of a medical disorder that has been proven to be significant and real. What is even more worrisome is that the type of report published by the Therapeutics Initiative, which according to the ADHD experts would never have been published in a legitimate medical journal, was put out by the media only furthering the misinformation on ADHD.
The only way to stop this type of misinformation from continuing to be spread by the media with a goal of sensationalism is for those of us in the field and those impacted by ADHD to speak up.
Therefore, CADDAC sincerely congratulates and thanks these physicians, Drs. Diane McIntosh, BSc Pharmacy, MD, FRCPC, psychiatrist and clinical assistant professor, UBC; Derryck Smith, MD, FRCPC, psychiatrist and professor emeritus, UBC; Don Duncan, MD, FRCPC, psychiatrist and clinical assistant professor, UBC, clinical director, B.C. Interior ADHD Clinic; Dorothy Reddy, BSc, MD, FRCPC, research fellow, psychiatrist; Julia Hunter, BSc, MSc, MD, FRCPC, psychiatrist, for speaking out.
CADDAC strongly encourages families and adults impacted by ADHD to send a letter to the editor of any publication that furthers the spread of misinformation about ADHD, even when it is an opinion piece. The test that I use when reviewing an article on ADHD is to question whether the same bias and questioning about the validity of the disorder would occur if the mental disorder being discussed was depression.
Reading the title of this article, ADHD can be your super power immediately caused me a great deal of concern and I am sure angered many of the millions of Canadians impaired by ADHD. While this article is attempting to be uplifting, and the message that those with ADHD can find fulfilling careers is a good one, many adults with ADHD will find this article very disheartening and frustrating. It makes it seem that those with ADHD just need a diagnosis, some coaching and a good assistant to handle all the paperwork and they’ll be good to go. ADHD is on a spectrum from mild to severe and most often comes with coexisting mental health disorders. Finding a medical professional who is trained in ADHD and not charging a hefty fee over OHIP to assess for and diagnose ADHD is an extreme challenge. Proven treatments such as CBT therapy and coaching are not covered by provincial health care and are extremely expensive. The good news is that while research substantiates that ADHD can significantly impair learning these children can succeed in school when supported. But, how can we expect adults with ADHD to find fulfilling careers when many of our school boards and the Ontario Ministry of Education do not recognize ADHD as a disability allowing these students to access special education resources. So, let’s please also discuss the many barriers that still exist for those with ADHD.
This comment has also been sent to the Toronto Star.
March 29, 2018
Dear Premier Wynne,
We at CADDAC were very interested when we heard your announcements regarding additional funding for special education and mental health.
While this additional funding is welcome and certainly needed, the Ontario parents of students with ADHD are questioning how this additional funding will benefit their children. The fact is that if students with ADHD continue to be excluded from the categories of exceptionality by the Ontario Ministry of Education, and school boards in Ontario continue to use this fact to bar students with ADHD from officially being recognized as exceptional students this funding will mean next to nothing for them.
We have been promised that ADHD will be included as its own category in the new British Columbia Special Education Guidelines by both the former Liberal and now the new NDP governments. Yet there has been no change in Ontario in the past ten years, while other similar neurodevelopmental disorders, that are less prevalent, and often less impairing are listed.
I am attaching a letter that you sent to me ten years ago, outlining the very same response that we continue to receive from the Ontario Ministry of Education. Yet, despite all of these assurances we continue to hear from frustrated, desperate parents sharing heart breaking stories of children being stigmatized and suspended for their medical disability.
While the matter of including ADHD within a category of exceptionality is made out to be insignificant and a mere technicality, in reality it is causing huge issues for many of our students as a recent survey of parents has demonstrated. While it may not be the Ministry’s intent when excluding ADHD from a category of exceptionality, the message educators are receiving is that ADHD is not a disability and does not impair learning enough (even when abundant research tells us otherwise) for the Ministry and boards and therefore teachers to take it seriously. Teachers have shared this belief with us countless times, and they convey it directly to students by accusing them of not trying hard enough. Parents are told that ADHD does not qualify their child for special education support because it does no impair the child “enough”.
Interesting things happen when disorders are listed in a category, education for educators flows and students with ADHD are better understood and supported and representation occurs on SEAC’s and on MACSE giving a voice to those with ADHD.
Many Ontario parents that we hear from on a daily basis are frustrated beyond belief. They have expressed doubt that change will happen for their children with ADHD n Ontario under your present leadership.
However, I do think that this could change. I believe that they would really like to support your proposed funding initiatives for special education and mental health however it seems that children with ADHD have been left out again. Parents will require an honest guarantee that this funding would indeed benefit their children with an explanation of how this would occur. Unfortunately they have lived with platitudes and rhetoric for far too long.
Adults with ADHD also see themselves as excluded. There was no mention of therapy for those with ADHD, only anxiety and depression. Research informs us that untreated ADHD can cause anxiety and depression and that Cognitive Behaviour Therapy is hugely beneficial for those with ADHD. When we treat anxiety and depression without treating the underlying ADHD all treatment is unsuccessful. In addition, adults with ADHD are being charged over OHIP for assessments. Why are some mental health disorders supported in your additional funding and other not?
We are also contacted by adults with ADHD routinely and I just presented to a large group of Ontario adults with ADHD. I believe that this group would also really like to support your plan for additional funding for mental health, but they too find that they have been given no reason to do so.
I would like to meet with you Premier Wynne to discuss how we can assure those with ADHD that your initiates will offer them additional support and services.
President, Centre for ADHD Awareness Canada
With cc to
Hon Indira Naidoo-Harris
Hon Helena Jaczek
Premier Kathleen Wynne and the Toronto Star were sent this letter by CADDAC recently in response to the Liberal party's promise for increased mental health funding, in particular for children and youth.
Hon Kathleen Wynne
Leader, Liberal Party of Canada
Dear Premier Wynne,
Additional funding in Ontario for mental health is certainly needed and very welcome. Resources are few, wait times are long and physicians are charging over OHIP for assessments. However, parents of children and youth with the most prevalent childhood mental health disorder, Attention Deficit Hyperactivity Disorder (ADHD), and adults with ADHD are wondering if they are going to be left out again. ADHD is never mentioned during metal health awareness campaigns, in press releases by mental health hospitals, or by national and provincial commissions on mental health. ADHD is not being addressed by our government. There are no working committees on ADHD in Ontario although significant socioeconomic costs result when we do not diagnose and treat this disorder. Abundant research has shown less academic achievement and fewer years of education leading to lower paying jobs, more accidents, an increase in additional mental health disorders, more substance use and abuse, less employment and a greater need for social assistance, more involvement in the justice system and a two-fold risk of early death. When we link these costs with the fact that ADHD is one of the most treatable mental health disorders, that students with ADHD can go on to post-secondary education when supported and become successfully employed in the career of their choice, it makes no sense that we are not giving this mental health disorder more attention.
President, Centre for ADHD Awareness Canada
On December the 4th 2017 CADDAC met with Minister Fleming and his staff to discuss ADHD in BC schools, our recent policy paper, and rumours that the highly anticipated new BC Special Education guidelines, placing ADHD in a standalone category, would not be released.
Here is a summary of what the Minister and his staff shared with CADDAC.
The guidelines in special education have been delayed due the change in government and a full review going forward in K to 12 funding. CADDAC was assured many times that changes to the new Special Education Guidelines, incorporating the changes in DSM 5 resulting in the inclusion of ADHD as a standalone category, are not being considered for removable. They are not looking at preventing this due to the restoration of old language of class composition in the teachers’ contract. There has been no conversation on their part regarding limiting designations of special needs students. They have been focusing on hiring more educators to meet these students’ needs.
During the process of reviewing funding they will be reaching out to stakeholder groups after they complete their financial consultation. They will be informing CADDAC on a timeline for submissions.
Deputy Minister Laura Sampson will be staying in touch to up-date CADDAC on these issues.
The Ministry is aware that their web site information on ADHD for educators is out-dated. They are in the process of developing up-dated information.