After receiving numerous e-mails from people unset about this article asking CADDAC to respond, CADDAC submitted this letter to the editor of the Vancouver Sun. Unfortunately the restricted number of words did not allow me to cover all the issues I had with this article, but the hope is that others will also contact the paper about this article.
Re Prescribing of ADHD stimulants has soared in B.C., agency warns
This is an unbalanced article, meant to sensationalize a very complex medical issue that continues to be misunderstood and stigmatized. It is rather shocking that this article only speaks about issues with behaviour and never mentions impairment in attention regulation which causes impairment in daily functioning, long term academic impairment and is the most frequent reason why physicians and parents choose to treat with medication. If 5 to 9% of children have ADHD, than 4% of children receiving medication might very well mean that we are finally doing a better job at diagnosing and treating ADHD. Research has shown that psychotherapy for children with ADHD is not beneficial, but educating adults who spend time with the child about the impairments that ADHD causes and how to support them is. Alan Cassels questions whether smaller classrooms will decrease prescribing of ADHD medication, but a better question would be why is BC not recognizing students with ADHD as at risk learners and educating their teachers on how to better support these students in the classroom?
Heidi Bernhardt
CADDAC's Executive Director Heidi Bernhardt, Natalie Wadell a Waterloo School Trustee and Dr. Ainslie Gray were featured on TVO's The Agenda discussing the lack of recognition of ADHD in Ontario schools as an Ontario election issue this past week.
Directly after our interview representatives from the four parties discussed special education in Ontario schools. You will need to watch this interview until the very end to understand the significance for students with ADHD.
View the episode on special education in Ontario schools
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.
A Follow-up in our recent post "Changes to Stimulant Medication Treatment in BC - Why Should You be Concerned?"
A revised draft of the Safe Prescribing Guidelines was released by the College of Physicians and Surgeons of British Columbia (CPSBC) on April the 26th 2018. In the previous Guidelines or “Practice Standard”, the College required annual urine drug screens or pill counts for all adults on stimulant medication. They also prohibited the prescription of sedatives or opiates in any adult being treated with a stimulant.
The new proposed Practice Standard – Safe Prescribing of Opioids and Sedatives – has removed stimulants from the previous document altogether and the proposed Standard applies only to prescribing of opioids and sedatives.
CADDAC, along with the Canadian ADHD Resource Alliance (CADDRA) advocacy committee members, actively campaigned against the previous document since its launch in 2016. Both organizations are very pleased that the College has responded to these efforts and removed stimulant medication from these guidelines.
CADDAC would like to thank those of you who responded to our call to action and contacted the College and your MLAs about this issue.
Access CADDRA response HERE
Access the new draft document (focusing exclusively on opiates and sedatives) HERE
I just found out about a brand new area of research on ADHD that I find fascinating. For many years I have wondered why those, including family members, with ADHD express extreme reluctance and sometimes downright refusal to tackle certain tasks that others find simple.
I was alerted about a recent study looking at Differences in Perceived Mental Effort Required and Discomfort during a Working Memory Task between Individuals At-risk And Not by one of our members who was confused by the term “at-risk for ADHD”. So, I decided to go directly to the source and contacted Maggie Toplak, one of the researchers, who I happen to know. Dr. Toplak shared my questions with her co-researcher on this study, Dr. John Eastwood.
Here is the information that was provided by Dr. Eastwood.
What does the term “at-risk for ADHD” mean?
We used the Adult ADHD Self Report Scale (ASRS), which is a symptom checklist based on DSM diagnostic criteria. It is used as a screening tool to identify who would likely meet criteria for ADHD. However, it is not a full, formal assessment. Thus, we labelled those who were identified on this screen as likely having ADHD as being "at risk".
What is this study looking at?
There is little work on ADHD and the experience of mental effort. Most models assume that those with ADHD avoid effortful tasks because they either have diminished capacity to complete effortful tasks and/or because they lack motivation to complete effortful tasks.
What are the findings to-date?
Our work is hinting - much more still needs to be done - at the possibility that individuals with ADHD experience effortful tasks as being more distressing and uncomfortable than those without ADHD. Sort of like a strong negative emotional response...even in situations where they are doing as well as those without ADHD. The idea is that the same situation is experienced differently. So it may be less about cognitive ability and motivation and more about emotion. The same mental task gives rise to different emotions for those with and without ADHD. If so, this means we need interventions that focus on reducing the emotional reaction to effortful tasks rather than simply interventions that work on increasing executive functioning skills (to improve ability on tasks and ability to self-regulate motivation).
Access information on another study in this area HERE
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.
Childhood ADHD
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.
Adult ADHD
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.
Sincerely,
Heidi Bernhardt
President, Centre for ADHD Awareness Canada
With cc to
Hon Indira Naidoo-Harris
inaidoo-harris.mpp.co@liberal.ola.org
Hon Helena Jaczek
hjaczek.mpp.co@liberal.ola.org
The Toronto Star was sent this letter by CADDAC in response to the Liberal party’s promise for increased funding for special education resources.
Additional funding for special education is welcome and needed, but Ontario parents of students with ADHD are questioning how this additional funding will benefit their children. If change does not occur, this new funding will mean next to nothing for these students. The Ontario Ministry of Education and many school boards in Ontario refuse to recognize students with ADHD as students who qualify for special education resources. Despite the fact that an abundance of research exists, demonstrating ADHD’s risk to learning when students are not supported, few educators are receiving training on ADHD and others are barred from offering support. ADHD is the most prevalent neurodevelopmental disorder seen in schools. The exclusion of ADHD in Ontario special education categories, when other similar disorders are included, smacks of discrimination.
Heidi Bernhardt
President, Centre for ADHD Awareness Canada
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.
Heidi Bernhardt
President, Centre for ADHD Awareness Canada
On March the 15th CADDAC met with the Office of the Ombudsman of Ontario to discuss the office’s role. This meeting was a follow-up to our e-mail outlining issues that parents in Ontario were having accessing support for their children with ADHD in schools.
While the Ombudsman’s Office wished to make sure that we clearly understood their role (see below), they did state that if a parent had followed the school hierarchy, from principal to superintendent, when voicing their concerns and felt that unresolved issues remained around policy and procedure a complaint could registered with the Ombudsman. Some examples of things that would be under the jurisdiction of the Ombudsman’s office:
If you feel that these administrative procedures have not been followed then it would make sense to contact the Ombudsman’s office. CADDDAC presented our understanding of the issues and complaints have been filed in the past, so the office is well aware that issues do exist. They are prepared to follow-up if complaints fall within their jurisdiction.
CADDAC has been advised that if we are aware of individuals who continue to have administrative concerns with any organization that falls under the Ombusman’s authority, we are to encourage them to contact the Office of the Ontario Ombudsman by calling their intake line at 1-800-263-1830, or filing an online complaint form at https://www.ombudsman.on.ca/have-a-complaint/make-a-complaint.
For further information on how the Office can help with these situations: https://www.ombudsman.on.ca/Media/ombudsman/ombudsman/Documents/Complaints-about-SCHOOL-BOARDS-EN-accessible_1.pdf
Information on the Office of the Ombudsman of Ontario
The office is appointed under the Ombudsman Act as an independent and an impartial Officer of the Ontario Legislature. The Ombudsman reviews and investigates the administrative conduct of provincial public sector bodies, including school boards and the Ministry of Education. The Ombudsman’s focus is on administrative issues and not matters of broader public policy. The Ombudsman does not act on behalf of or as an advocate for individual complainants, and does not provide legal advice and they do not advocate for a change in policy or procedure.
With respect to school boards, once a complaint is filed the office would review the board’s administration, including their adherence to, and application of policies and procedures. The Ombudsman may make recommendations to resolve problems we identify with the administrative conduct of a school board or to enhance governance and improve processes. The Ombudsman’s office cannot overrule or reverse the decisions of school boards and does not have the authority to direct school boards on what decisions to make, or substitute his opinion for that of the elected board of trustees.
The office is intended to be an office of last resort. This means the Office will not intervene in a matter if the individual has not first addressed the issue with the organization and exhausted its internal complaint, appeal or resolution processes. Generally, the Office will refer the individual to any such process before we review the matter to determine the nature and extent of our role, if any. The individual is able to return to the Office if he/she remains dissatisfied after exhausting the organization’s internal processes.
Provided to CADDAC by Gina Pera author and educator
In recent years, biomedical research has identified many "drug-response genes.” These are genes that wield a substantial impact on how people react to medications.
Several companies are making consumer-level tests available, with ADHD medications as well as with medications for depression and more. These purport to identify the kind of drug-response genes the consumer might have. For now, these tests require a physician’s prescription. That does not mean, however, that every physician ordering these tests know how to correctly interpret the results.
The point of this blog series: to help mental healthcare consumers understand how these test results might prove useful—and how the results are extremely limited.
Though far from perfect, these tests can now provide valuable insights into what drugs, at what dosage, might be best for treating your or your loved one’s ADHD— and which drugs might pose complications.
Points to note:
ADHD Gene Testing Series: A Recap
Part 1 provides an overview to the topic of genetic testing as it relates to ADHD medication-response.
Part 2 shares testing results for my husband (who has ADHD) and me (who does not), along with my husband’s personal reactions to our disparate genes.
Part 3 defines what is meant by the term genotyping test. Briefly, it’s a test that informs you of your genetic particulars. Specifically for our purposes in this blog series, it refers to tests that identify which variants of the drug-response genes known to be associated with ADHD medications that you have.
Part 4 explains how, when, and why this data might prove helpful, delving more deeply into the topics of pharmacokinetics (what your body does to the medication) and pharmacodynamics (what the medication does to the body).
Part 5 reminds that genotyping data provides only one piece of the puzzle. There are many other factors that can affect how well a medication works for you, including overall health factors and co-existing conditions.
Part 6 looks at the specifics of Gina’s testing results,
Part 7 looks at the specifics of Gina’s testing results,
For more information of Gina's books and blog please access:
Is It You, Me, or Adult A.D.D.?
