We get it! Sharing a video of yourself talking about ADHD on ADHD Speaks is scary!
Many parents who talk to us at length, sharing their frustrations and heartaches, are afraid to speak out about ADHD in public. They have let us know that while they would love to share their stories online they are concerned about their child who just wants to stay under the radar. This is totally understandable. Kids with ADHD get centered out far too often and not for their successes – most often just because they have ADHD. So who would want to make their child the poster child for ADHD.
We have a solution!
Be as creative as you like! We want your stories anyway you want to share them!
The long term goal is that eventually everyone will feel comfortable talking about ADHD, but as parents and grandparents of kids with ADHD and adults with ADHD we understand that speaking up about ADHD is scary.
"ADHD Speaks" is a marathon and not a sprint. CADDAC understands that it will take time to make this happen and we want to let you know that we are in this for the long haul.
CADDAC is committed to changing the understanding and perception of ADHD.
We hope you’ll join us on this journey in any way that makes you feel comfortable!
Canadian celebrities Patrick McKenna, Tazz Norris, Rick Green, Simon Rakoff, and Zoe Kessler all have adult ADHD. They have all sent in their personal thoughts on ADHD by sharing their selfie videos with CADDAC. Just like you can!
These videos are being shared on CADDAC’s social networks throughout October, ADHD Awareness Month. Additional videos will be added over the up-coming months as they come in.
Check out the videos on CADDAC’s YouTube Channel.
Why we also need to hear your voice on ADHD
When adults with ADHD and parents of kids with ADHD get together it is actually difficult to get them to stop talking about their experiences. They freely voice their frustration with the continued lack of understanding of ADHD by non-ADHDers along with the overabundance of judgment and unsolicited advice they receive from those who know nothing about ADHD. Imagine someone telling a parent of a child with any other type of medical disorder that they should ignore the advice of medical experts, the consensus of medical associations across the world and decades of research, and trust their uneducated advice.
So while we at CADDAC hear all about your experiences, thoughts, frustrations and heartaches, the rest of the world, the government representatives and decision makers, the media and public and all those ill-informed optioned people are not being informed by your life experiences.
They need to hear about ADHD’s impact on your lives; what caring committed parents you are; what great employees you are, or could be with a few accommodations. They need to hear about the lack of resources for ADHD, that it is a life long struggle and how hurtful their misplaced judgment really is.
Things won’t change unless everyone speaks up about ADHD!
Join the ADHD Speaks movement. Send in your video and audio recordings along with your written stories. Write or call your elected officials and tell them you do care about ADHD and want to see change happen.
Go to www.caddac.ca to see how you can help.
Patrick McKenna is on a mission to get the word out about ADHD: “People question the validity of ADHD because they can’t see the problem. If only those with ADHD could wear a bandage on their head 24/7 maybe people would not be so dismissive of ADHD symptoms which can cause a great deal of pain.” Rick Green, of TotallyADD, addresses it on a more personal level, “When I received my diagnosis at the age of 47 it explained so much. I finally understood why some things were so easy for me to accomplish and others were impossible to complete, no matter how much effort I put into it. It changed my life and the way I look at myself.”
In addition to taking the lead in reaching out to other comedians for this campaign, Patrick McKenna will be starring in “Is it Me or the ADHD?” along with the Improv group "Two Men & a Lady, during CADDAC’s Live show, “Living With ADHD, A Funny Yet Serious Look At Having ADHD” occurring on the Saturday night of CADDAC’s 10th Annual ADHD Conference, taking place this October 27th and 28th in Halifax, NS. The conference is geared to parents of children with ADHD, adults with ADHD and their families, educators, and the medical community.
10th Annual ADHD Conference
October 27 & 28, Saint Mary’s University, 923 Robie Street Halifax NS B3H 3C3
https://caddac.ca/adhd/events/3531/1540630800/1540742400/
Speaker Biographies: https://caddac.ca/adhd/wp-content/uploads/2018/07/Bios-final.pdf
Living With ADHD, A Funny Yet Serious Look At Having ADHD
This is a show for all ages, with couple and family discounted ticket rates
Is it Me or the ADHD? Starring Patrick McKenna and the Improv Group - "Two Men & a Lady
McNally Theatre, Saint Mary’s University, 923 Robie Street, Halifax, NS, B3H 3C3
Oct 27th, 2018, 7:30pm
https://caddac.ca/adhd/events/living-with-adhd/
Patrick McKenna and Other Canadian Celebrities Speak out About ADHD and Invite the Public to Join the Conversation #ADHD Speaks
On October 2nd 2018 CADDAC, the Center for ADHD Awareness Canada, launched “ADHD Speaks” a multiyear national campaign to get people talking and break the silence on ADHD. People all across the country are invited to submit selfie videos and use the campaign hashtag, #ADHDspeaks, to join the conversation.
CADDAC’s hope is that the creation of the ADHD Speaks movement will finally provide a platform for those living with ADHD to have their voices heard. Canadians impacted by ADHD are still afraid to open up about this condition. CADDAC believes that there is still so much misinformation and judgment out there about ADHD that just continues to fuel the existing stigma. This has caused individuals and families to feel shame and remain fearful about sharing their struggles and experiences. This lack of discussion about ADHD has led our politicians and decision makers to conclude that their constituents and stakeholders don’t care about ADHD; that they don’t care about the lack of resources and serious consequences that occur when ADHD is not recognized and treated. That just can’t be the case when nearly two million Canadians are affected by this disorder. We need to hear the voices of those impacted by ADHD.
Check out How a Few Minutes of Your Time can Effect Change!
CADDAC is inviting everyone living with ADHD, their friends and families, medical professionals, educators and celebrities, to share their experiences and revelations about ADHD by submitting a brief selfie video recorded using their smartphone. They can also send an audio message or written story if they prefer. People are also encouraged to share their stories on Facebook, Twitter, and Instagram, using the #ADHDspeaks hashtag. Participants can obtain more information and tips for recording and submitting their thoughts and stories on CADDAC’s website: www.caddac.ca.
Check out
A personal ask from Heidi Bernhardt, the President of CADDAC
A personal ask from Patrick McKenna, actor, director and comedian
View Celebrity ADHD videos rolled out during October, ADHD Awareness Month
New research just published in the Journal of the American Medical Association is questioning whether heavy use of media platforms over time can increase the presentation of ADHD symptoms in adolescents. The study looked at the use of 14 different digital media activities using platforms such as social media, texting and streaming media in a large number of adolescents, 2587, in grades 10 to 12. According to their responses they were divided into three categories, no use, medium use and high use. Adolescents with pre-existing ADHD symptoms were intentionally excluded from the study.
The study’s findings reported that among adolescents followed up over 2 years, there was a statistically significant but modest association between higher frequency of digital media use and subsequent symptoms of ADHD. The results indicated that those with low use of digital media over the two-year period, about 500 adolescents, had the fewest number of symptoms, 4.6%. Those with highest use of digital media showed the highest rate of ADHD symptoms, between 9.5% and 10.5%. The researchers cautioned that the study's findings did not prove cause and effect; more research would be needed to do so. However, they were confident in saying that higher levels of digital media use did increase the likelihood of ADHD symptom presentation in the future.
Please access these links for more detailed information and expert opinion on the study.
In February of 2017 I called the Ontario Human Right Commission asking for an up-date on ADHD in the Ontario school system and spoke with Ms. Cherie Robertson, Senior Policy Analyst Policy, Education, Monitoring & Outreach Ontario Human Rights Commission. This was followed up with an e-mail requesting that the Ontario Human Rights Commission (OHRC) put in writing that Attention Deficit Hyperactivity Disorder (ADHD) is a disability within the meaning of the Ontario Human Rights Code (Code). In the e-mail and discussion I outlined our concerns that students and their families are encountering barriers in the education system and are being told that students with ADHD-related needs are not entitled to education resources or accommodations, since ADHD is not included in the Ministry of Education’s “special education” categories.
At that time, Ms. Robertson assured me that ADHD was indeed a disability under the Code, and advised that she would be in touch with more information once the OHRC had completed its update of the Guidelines on Accessible Education, 2004 policy publication.
Ms. Robertson did indeed follow-up with me last week to inform me that a draft of the OHRC’s Policy on Accessible Education for Students with Disabilities has now been approved and is scheduled for a fall release.
Ms. Robertson also shared some excerpts from the Policy that she thought would be of interest to CADDAC, which she gave me permission to share with you.
Some of the up-dates that directly address ADHD in Ontario schools are below exactly as seen in the guidelines including examples, notes and citations.
Section 2.2 of the Policy states:
It is important to note that, while the Ministry of Education has devised its own framework for identifying “exceptional pupils,” it is the Ontario Human Rights Code and human rights case law that establishes that education providers have a legal duty to accommodate the disability-related needs of students to the point of undue hardship. This legal duty exists whether or not a student with a disability falls within the Ministry’s definition of “exceptional pupil,”[1] and whether or not the student has gone through a formal IPRC process, or has an IEP.
Example: The OHRC has heard concerns from parents and advocacy organizations that some Ministry of Education documents fail to specifically name ADHD as an “exceptionality” and that, as a result, some education providers are failing to provide accommodation for this condition.[2] The definition of disability in the Code, and as interpreted in human rights case law, is broader than the Ministry of Education exceptionality categories. For example, human rights jurisprudence has explicitly recognized ADHD as a disability requiring accommodation under the Code.[3]
It is important to note that the Code has primacy over other legislation, including the Education Act. [4] This means that where there is an inconsistency between the Code and the Education Act, the Code will prevail.[5] And, in one case, the HRTO found that the Ministry of Education could be potentially liable for discrimination where its definition of exceptionalities prevented or delayed a student from receiving required accommodations.[6]
Section 8 of the Policy states,
Under the Code, education providers have a legal duty to accommodate the needs of students with disabilities who are adversely affected by a requirement, rule or standard.[7] Accommodation is necessary to address barriers in education that would otherwise prevent students with disabilities from having equal opportunities, access and benefits.
Ms. Robertson also shared that the policy includes other examples that reference situations where students with ADHD have accommodation needs in education. She stated that she hoped that these statements and the accompanying examples help to address the issues that I had raised with her and that they help to make clear to education providers what the OHRC’s position is in this regard.
Once the Policy is released to the public in the fall Ms. Robertson promised to send a copy to CADDAC.
While these guidelines are only one more step in the right direction to making sure that students with ADHD receive the education resources they deserve, it is another step forward in a long journey.
Heidi Bernhardt
[1] In D.S. v. London District Catholic School Board, 2012 HRTO 786 (CanLII) [D.S.], the HRTO stated at para. 62: “[T]he issue of whether or not a child is an ‘exceptional student’ as that term is defined under the Education Act is not co-extensive with the issue of whether that child has a ‘disability’ within the meaning of the Code even where that child’s disability requires accommodation under the Code. To take a simple example, a child with a mobility impairment may not require placement in a special education program, but may nonetheless require accommodation to access school services. Similarly, a child who is gifted and thereby may be designated as an ‘exceptional student’ under the Education Act and require a special education program is not likely to be regarded as having a ‘disability’ under the Code.”
[2] Note that the approach of the Ministry, school boards and school staff is inconsistent. For example, while parents and students are frequently having to fight with front-line educators and school administration to have ADHD recognized and accommodated, the Ministry itself issued a memorandum to school boards, dated December 19, 2011, which states that the explicit inclusion of medical conditions (i.e. autism) in the categories of exceptionalities is not intended to exclude other medical conditions, specifically mentioning ADHD. The Ministry further states that the determining factor for the provision of special education programs is the needs of a student, and not a diagnosed/undiagnosed medical condition:
Inclusion of some medical conditions (e.g. autism) in the Guide's definitions of the five categories of exceptionalities is not intended to exclude any other medical condition that may result in learning difficulties, such as (but not limited to) Attention Deficit Disorder/Attention Deficit Hyperactivity Disorder (ADD/ADHD), Fetal Alcohol Syndrome, Tourette Syndrome, Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, and Fibromyalgia Syndrome.
For example, a student with ADD/ADHD may present learning needs in many ways in the school setting and the student may be identified as exceptional within one or more of the categories of exceptionalities (including, Behaviour, Communication, Intellectual, Physical and/or Multiple) depending on the presentation, and the degree of the impact that ADD/ADHD has on that student's learning.
See: Ministry of Education, “Categories of Exceptionalities,” Memorandum to Directors of Education, et al, December 19, 2011; available online: http://www.edu.gov.on.ca/eng/general/elemsec/speced/2011CategoryException.pdf (date retrieved March 7, 2018).
[3] See, for example, Gaisiner v Method Integration Inc, 2014 HRTO 1718 (CanLII) [Gaisiner]; Cohen v Law School Admission Council, 2014 HRTO 537 (CanLII) [Cohen]; D.S., supra note 23; Binkley v Blue Mountain Resorts, 2010 HRTO 1997 (CanLII); Kelly v UBC (No 3), 2012 BCHRT 32 (CanLII) [Kelly], upheld on merits on judicial review in University of British Columbia v. Kelly, 2016 BCCA 271 (CanLII); Ryan v Sprott Shaw Community College, 2018 BCHRT 30 (CanLII); Dewart v Calgary Board of Education, 2004 AHRC 8 (CanLII); A and B obo Infant A v School District C (No. 5), 2018 BCHRT 25 (CanLII). See also: C.M. v. Toronto District School Board, 2012 HRTO 1853 (CanLII) [C.M.]; L.B. v Toronto District School Board, 2015 HRTO 1622 (CanLII) [L.B.], reconsideration refused 2016 HRTO 336 (CanLII); C.T. v Greater Essex County District School Board, 2017 HRTO 665 (CanLII); R.B. v Keewatin-Patricia District School Board, 2013 HRTO 1436 (CanLII).
[4] Section 47(2) of the Code.
[5] As was stated by the HRTO in L.B., supra note 25, at para. 98, “Since the Code has primacy over all other legislation in the Province, it is expected and must be assumed that school boards implement the Education Act in accordance with their Code obligations.” See also: Torrejon v. 114735 Ontario, 2010 HRTO 934 (CanLII), upheld on judicial review in 1147335 Ontario Inc., o/a Weston Property Management v. Torrejon, 2012 ONSC 1978 (CanLII).
[6] Davidson v Lambton Kent District School Board, 2008 HRTO 294 (CanLII), at paras 33–38.
[7] See section 17 of the Code, supra note 2. Requirements under the CRPD also provide that States Parties, including Canada, must take steps to make sure that people with disabilities are provided with accommodation (for example, to ensure equal access to education): see CRPD, supra note 7 at Article 13(1), Article 24(2)(c), and Article 27(1)(i), respectively. “Reasonable accommodation” is covered under Article 5 generally.
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.
CADDAC was just notified of the recommendation by the Committee to Evaluate Drugs or CED (part of OPDP) as a follow-up on our advocacy efforts to have Intuniv XR covered under the Ontario Public Drug Plan.
The CED has recommended that Intuniv XR be reimbursed under the Exceptional Access Program (EAP) for children with ADHD who require adjunct (additional medication) to psychostimulants or are intolerant of psychostimulants and cannot be treated with atomoxetine or clonidine. More specific criteria will be developed by OPDP, but information on stimulant medication trials will be required as part of the EAP form to be filled out by physicians.
The CEDs recommendation will be provided to the Executive Officer of the Ontario Public Drug Programs who will make the final decision.
While not perfect, this is good news for those families who qualify for the Ontario Public Drug Program and whose children are being treated with Intuniv XR. If approved, this will allow children who have insufficient or no therapeutic benefit from other ADHD medication, or cannot tolerate stimulants, Strattera or clonidine to access to Intuniv XR.
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.
Heidi Bernhardt
On June 1st at their AGM, the Ontario Public School Board Association voted on a resolution that was put forward by The Waterloo Region District School Board, through the efforts of Trustee Natalie Waddell.
There were 29 boards present that could vote (by way of a single voting delegate) with a total value of 110 votes. The voting was a weighted vote, based on the full time enrollments at each board. The motion received a total of 97 of the 110 votes in favour. It passed with 88% in favour!
This is the final motion that was approved:
Be it resolved, that OPSBA actively lobby the Ontario Ministry of Education to:
Alter the existing categories of exceptionality to include ADHD within a category, other than behaviour, thereby acknowledging ADHD as a neurodevelopmental disorder that significantly impairs learning, allowing students with ADHD to be identified as exceptional learners as their peers with Autism and learning disabilities (similar neurodevelopmental disorders) are, thereby securing their legal right to accommodations for their disability, and
Ensure that all Ontario educators are trained in ADHD impairments, as well as in the appropriate classroom accommodations and teaching strategies that can be used to support these students in the classroom and school environment, and
That this motion be referred to the Minister’s Advisory Council on Special Education (MACSE) to evaluate and act on.
This is good news for those concerned about the lack of recognition of students with ADHD under the Ontario Special Education Categories and OPSBA should be congratulated for their willingness to stand up and be counted on this issue.
CADDAC also congratulates and thanks Natalie Waddell for her commitment to ensuring that students with ADHD receive the recognition and resources they deserve.
View the Waterloo news article Here
