Dear Mister MacLeod,
I am reaching out to you through this e-mail on behalf of the Centre for ADHD Awareness, Canada, or CADDAC. We represent countless Ontario families that we hear from daily, who struggle with the lack of recognition of ADHD and therefore services for this disability in Ontario. We applaud your Ministry for allowing families of children with other disabilities to also be heard.
Did you know that Attention Deficit Hyperactivity Disorder, or ADHD, was clinically observed more than 100 years ago, is a lifelong disorder and a significant risk to health, learning and employment. ADHD is the most common neurodevelopmental disorder occurring in children, with incident rates exceeding Autism and learning disabilities. But, children with ADHD who receive the proper treatment and support can grow into success contributing members of our Ontario society.
Untreated, or inadequately supported, ADHD leads to increased school dropout, increased unemployment and social services, increased physical and mental health issues including addiction and substance abuse and increased involvement with the justice system. ADHD incident rates in our correction systems are 5 fold for adults with ADHD and 10 fold for youth with ADHD. One third of Canadian inmates have ADHD despite the fact that we know that treating the disorder greatly reduces recidivism.
Although multimodal treatment for ADHD is recommended, all types of treatment, other than medication, including cognitive behaviour therapy and childhood behaviour therapy, are not covered by Ontario provincial health care.
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 any of the Ontario special education categories of exceptionality.
This has resulted in many school boards using this as an excuse to not IPRC
students with ADHD leading to inadequate resources for students with ADHD. One
of our major asks of the Ontario government's Ministry of Education is that
ADHD be included in the categories of exceptionality. Since learning
disabilities, Austism and ADHD are all neurodevelopmental disorders that impair
learning, so it would only make sense to group these disorders together in one
category.
Similar to students with Autism many students with ADHD are also being excluded
from a full day of education in our Ontario school boards.
We very much want to be included in any stakeholder consultation on this issue
that is being initiated by your government.
We would very much like to meet with you to discuss these issues and the continued inequity of access of education and health resources faced by children and adults with ADHD in Ontario.
I look forward to hearing from you regarding possible meeting dates.
Sincerely,
Heidi Bernhardt
President / Executive Director CADDAC
Take advantage of this unique opportunity to have your voice heard by the Ontario Government on ADHD issues that affect your family. Minister Lisa McLeod, the Ontario Ministry of Children, Community and Social Services, recently informed the public that the Ontario Government is open to also hearing from families of children with other disabilities through the Autism Consultation process. ADHD has been listed as one of the diagnoses. In the month of May 2019, the Ontario Government is providing three ways for you to participate in this consultation process.
You can register to participate in one of three Town Halls, (access the link for dates and instructions) where you can participate live during a phone call. They are asking that you restrict your comments to 30 seconds. They are only allowing one hour for these town halls and warn that they may not have enough time to hear everyone in the queue. Staff from the Ministries of Children, Community and Social Services, Education and Health and Long-Term Care will be listening in during the sessions.
Another option is participation in a 20 minute online survey.
The third option is to write to them through
Email:
autismconsultations@ontario.ca
Or
mail:
Ontario Autism Consultations
Ministry of Children Community and Social Services
Communications Branch
7th Floor, 438 University Avenue
Toronto, Ontario, M7A 1N3
The deadline for a mailed submission to be posted and to participate in the survey is May 31, 2019.
According to a new study on the Family Burden of Raising a Child with ADHD the cost of raising a youth with ADHD was more than five times greater compared to raising a youth without ADHD. The total economic burden per child with ADHD was $15,036 US compared to $2,848 per neurotypical child on average. This cost difference remained even after additional disorders such as intellectual impairment, oppositional defiant disorder symptoms, and conduct problems. Costs for medication and the direct treatment for ADHD were not included in these costs.
These additional costs were due:
These findings will not be surprising for families of children or grown children with ADHD, but having hard data could be very helpful in our Disability Tax Credit advocacy efforts.
CADDAC and CADDRA are currently in communication with the federal government about CRA’s handling of Disability Tax Credit applications. In a recent letter to Senator Jim Munson and Diane Lebouthillier, the Minister of National Revenue, CADDRA stated that a recent survey of ADHD medical professionals reported that they had experienced an increase in requests for additional information even when that information was present in the original application. This has resulted in the filling out these forms becoming an onerous task taking away time spent more appropriately on patient care. CADDRA members also indicated that they felt that CRA was not respecting their expertise as qualified health care practitioners. Also in this joint letter, CADDAC reported that a recent survey of individuals with ADHD and their families found that 63% of patients with ADHD were denied the DTC even when their physicians found them markedly impaired in keeping with the DTC criteria.
The letter went on to say that while CADDRA and CADDAC appreciated the work done in recent reports, the Senate Standing Committee on Social Affairs, Science and Technology: “Breaking Down Barriers, a critical analysis of the Disability Tax Credit and the Registered Disability Savings Plan” and the “Disability Tax Credit: Medical Practitioners’ Report”, October 2018, both these reports lacked vital input from neurodevelopmental organizations such as CADDRA and CADDAC. Both organizations offered our expertise both in general and with respect to disability assistance to the government.
For additional information on the study access
https://www.additude.com/cost-of-raising-adhd-child-study/
I read the Toronto Star article, Group worries kids with other disabilities forgotten amid autism crisis with much interest and I must say also some frustration. The below information was sent to
I wholeheartedly agree that many children with disabilities are being left out of this discussion while at the same time I applaud the parents of children with Autism for making their voices heard. We are still working at getting more parents of children with ADHD to speak out about the continued lack of recognition ADHD received in Ontario schools. Thankfully we now have some parents who are willing to speak out, but many parents unfortunately are still affected by the myths, stigma and judgment that surrounds ADHD. Hence out latest ADHD Speaks Campaign
The issues that are front and centre in the media at this time are some of the issues that we have also been discussing with Ontario Ministries of Education for almost two decades. Similar to students with Autism many students with ADHD are being excluded from a full day of education in our Ontario school boards. ADHD is the most common neurodevelopmental disorder seen in children world wide, with incident rates at least double or triple that of Autism. And while some students with Autism can be severely impaired, students with a severe case of ADHD are more impaired than a student with mild Autism. The two disorders also frequently co-occur in the same child.
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 any of categories of exceptionality that the Ontario Ministry of Education uses to categorize stud nest with special leaning needs. This has resulted in many school boards using this as an excuse to not IPRC students with ADHD leading to inadequate resources for students with ADHD. The situation is so bad that physicians report that parents are coming to them asking for a diagnosis of Autism rather than ADHD, because they know that this will get their child access to some 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.
One of our major asks of the Ontario government's Ministry of Education is that ADHD be included in the categories of exceptionality. Since learning disabilities, Autism and ADHD are all neurodevelopmental disorders that impair learning, it would only make sense to group these disorders together in one category.
While on The Agenda, prior to the election, this was a promise made by Christine Elliott. Please access this link to view the interview, https://www.tvo.org//video/programs/the-agenda-with-steve-paikin/promises-for-special-education. This segment followed an interview on the Agenda with CADDAC.
In addition, because ADHD is not included in a category of exceptionally many teachers do not view ADHD as a serious learning risk, when we have abundant research that clearly indicates that it is. We see 8-10% lower scores in literacy and numeracy for these students and far higher drop out rates, even though most are smart enough to go on to post-secondary education. Educators are also not receiving adequate training on classroom teaching strategies and accommodations that are beneficial to all students but essential to those with ADHD.
We have released several policy papers on ADHD and education over the years. Here is or latest paper, https://caddac.ca/adhd/wp-content/uploads/2017/10/Education-Policy-Paper-FINAL.pdf
Join the discussion about this post on our Facebook page , or become involved in our ADHD Speaks Campaign.
Heidi Bernhardt
https://www.thestar.com/news/gta/2019/03/14/group-worries-kids-with-other-disabilities-forgotten-amid-autism-crisis.html
CADDAC encourages BC residents who are concerned about this issue to contact their MLA.
Up-coming proposed changes to the special education funding model in BC, away from a model of designation to a prevalence based, inclusion, model may benefit students with ADHD or cause continued inequities. Much will depend on the recognition of these vulnerable students’ needs moving forward.
Background
In the fall of 2016 the new BC Special Education Guidelines draft was shared with CADDAC. We were encouraged to see that ADHD was to be added under the category of Learning Disabilities. CADDAC was then informed in the spring of 2017 that students with ADHD were to be recognized in a stand-alone category. Either option was acceptable to CADDAC. Although these categories would not be tied to additional funding, it would at least be a step forward in recognizing that these students have a disability, causing impairments, resulting in serious learning risks.
However, with the change in government everything was put on hold. During a meeting with Minister Fleming on December 4th 2017 CADDAC, as reported in a previous blog, was assured by the Minister that the Ministry was not considering changes to these guidelines and that ADHD would not be removed as a category.
Current Situation
After an e-mail exchange requesting clarification on changes to the funding model at the end of 2018 a meeting occurred on January the 30th with Kim Horn, the Executive Director, Sector Resourcing & Service Delivery of the Ministry of Education. During this meeting CADDAC learned that due to the proposed changes to a prevalence funding model, the fate of all designation categories and the new Special Education Guidelines is unknown. Unfortunately the move away from the use of designation categories and these guidelines could also mean that the clear message that ADHD was a disorder that warranted additional supports and resources for students to be able to meet their potential as learners might be lost, again leaving these student’s needs unrecognized and under serviced.
Since students with ADHD were inadequately recognized and serviced in past funding and designation models, extra care must be taken during this transition to ensure that these students be better understood and recognised as students with special learning needs.
CADDAC shared our concerns during the call and were invited to submit a paper outlining our concerns and recommendation to the Implementation Coordination Committee of the K12 Funding Review Committee.
Access CADDAC's submission Here
CADDAC’s ASK to the Ministry of BC Education
CADDAC requests that in the process of moving forward with the prevalence based funding model and the inclusion system of special education the BC Ministry of Education ensure that students with ADHD will receive equitable access to education by:
Summary
With the implementation of changes to the funding and education system the BC the Ministry of Education is in a position to put policies in place that will ensure that students with ADHD receive equitable access to education and have the right to reach their academic potential.
If you have questions or would like to discuss any of these issues or suggestions please contact Heidi Bernhardt at heidi.bernhardt@caddac.ca.
I read the Globe and Mail articles on Educating Grayson and Advocates for students with disabilities call on Ontario to stop school exclusions with great interest. CBC's "Metro Morning" also hosted an interview with a mother of a student with Autistism who had been excluded and the reply by a school principal.
The families that we represent have been contacting us for the many years to express their frustration and anxiety over this very issue. Many students with neurodevelopmental and mental health disorders, including ADHD the most prevalent, who express their symptoms and impairments in ways that schools find challenging (usually what is labelled as behavioural) are being asked to attend school for less hours than their peers. Students with ADHD in Ontario have the additional challenge of not even being officially recognized as students with a disability and exceptional needs, unlike students with Autism, although many of the impairments are very similar.
Understandably students with these exceptional needs can be a challenge for schools, but it is often made more challenging by a lack of understanding about the disorders, lack of educator training on how to work with these children, lack of support, resources and unfortunately sometimes also the false belief that the behaviour of these students is a choice, rather than a result of a disability. What I and many parents have found makes the greatest difference are educators, teachers and principals, who "get it". In other words, have training and insight, work with the families to figure out strategies and accommodations, and try to understand the student and their special needs, rather than being judgmental and punitive.
Many years ago when the Ministry of Education and the boards began speaking about inclusion and integrating children with exceptional needs into main stream classrooms, an advocate that we worked with, cautioned that inclusion without additional resources and support for educators and students alike was just a form of dumping students into the main stream - a recipe for disaster. For the past several years we have been seeing the result of this very process.
Over the many years that I have been working in this field I have seen many reports by Ministries and school boards on "education and learning for all". When asked for my opinion, my comment would be that it was a very pretty document often backed by good intentions, but without the implementation of more education and training for educators coupled with more resources and support it is just a pipe dream.
Similar comments have been sent to both Metro Morning and the Globe and Mail.
Heidi Bernhardt
Note from Heidi Bernhardt, CADDAC President
I am sharing this incident with you because the CADDAC board and I personally continue to be concerned about how information on ADHD is sometimes presented in the media. Unfortunately, poor, even if well-meaning, studies and their questionable findings are being reported, using by-lines meant to be eye catching and memorable. I understand that a reporter may feel that they are only regurgitating what a researcher puts out there, but when they report on an ADHD study that they are not qualified to evaluate and do not reach out to those who are, misinformation on ADHD just keeps increasing. And using headlines and personal stories to sensationalize and misinform just makes it worse. This harms families who are already stigmatized by all the misunderstanding and myths that continue to abound about ADHD. CADDAC and CADDRA are sometimes contacted by journalists seeking out ADHD experts to evaluate and comment on a new study prior to reporting on it. This is how it should be done.
I would be very interested in hearing your comments on this topic. You can send your comments to me at resources@caddac.ca
Huffington Post Article
On December the 7th the Huffington Post published an article titled, Mom's Postpartum Depression Linked To ADHD In Kids, Australian Study Finds ‘Parenting hostility' is connected to a child's eventual diagnosis or symptoms”. This was first brought to my attention on December the 8th when I was copied on a letter sent to the Huffington Post by a psychologist and contacted by a second psychologist concerned about the messages in this article.
In her complaint to the Huffington Post the psychologist stated that the by-line was,
“incredibly damaging to parents who are parenting children with “invisible disabilities,” especially ADHD, which has already been so heavily stigmatized in the media.”
She went on to add that the byline
“… makes the results appear causal, when they are not, but it is also entirely misleading. Only several paragraphs in do you finally get to the critical point made by the researchers: “We suspect that children's challenging behaviour early in life may be connected to mother's postnatal mental health." Why not lead with that critical information? Why not avoid contributing to the vast amount of misinformation and misunderstanding that is already making it so painful for families of children with this neurodevelopmental disability?”
Although the article was edited and the title and by-line changed to “Study On Postpartum Depression And ADHD Stresses Need For Maternal Health Support, Moms shouldn't blame themselves, researchers say” by the Huffington Post within hours after receiving the complaint, I and others remain concerned about this article. The article you now see on the Huffington post if not the original article.
Here is a comment by a parent that was sent to the Huffington Post that I was copied on.
“I see that there are some areas of the article which state that mothers should not be made to feel blamed for their child's ADHD, and that a child's ADHD may contribute to depression in the parent. However, the title of the article, certain statements within it, and the direct quotes from Melissa Doody, paint an entirely different picture. These imply that depression in the mother CAN indeed cause ADHD in a child. Anyone who skims through your headlines or through this article will come away with that message…I feel sorry for Melissa Doody, since she clearly believes that she is responsible for her child's ADHD, when she is absolutely not. Spreading her self-deprecating statements around is not helpful, and is simply irresponsible.”
When I personally contacted the author of the article it was suggested to me that there was no problem with the reporting but that rather I and the psychologist who complained simply did not like the information the study highlighted. To test this theory I reached out to some other medical professionals to get their impression of this article. Several pointed out that they had significant concerns about this article and the messages it was sending. One physician stated that articles like this made her blood boil. Several mentioned the fact that fathers had been completely left out of the equation and that this was another case of blaming the mother for the child’s problems.
“I consider this another version of the ‘Blame the mother syndromes’ that were taught to me in med school. I could argue quite passionately that the dysregulated infant who will later in childhood be diagnosed with ADHD is in fact the cause of the mother's postnatal depression.”
And
“However, this also brings me to my other major concern with both the article and the study itself: it is hideously gendered, and contributes to further mother-blaming in the world of mental health. There is no mention of fathers at all, and yet "parenting" is the term used, where what they're really looking at is ‘mothering.’"
Upon examining the actual study professionals commented that,
“…critical confounding variables are unaccounted for (i.e. most notably, the genetic links between ADHD, anxiety, and mood disorders), are all weak, at best.”
And
“Also important is to note that they did not control for cigarette or alcohol use during pregnancy or pre or perinatal birth complications when exploring the association between maternal post natal mental health and offspring symptoms of ADHD.”
A few other issues with the study were noted; children were not necessarily diagnosed with ADHD but rather reported to have ADHD by their parents; depression was not evaluated as to whether it was an on-going depression or a postpartum depression; mothers were not screened for ADHD.
I received other comments questioning the validity of this study’s finding and expect to receive more in the future, but since I am still receiving correspondence on this article from concerned parents and professionals I felt that it was important to comment on it sooner rather than later.
If necessary, I will write a follow-up on the actual study itself once it has been further analyzed.
Again, please feel free to let me know what you feel about this issue at resources@caddac.ca
Heidi Bernhardt
What we have discovered is that when asked to speak out about ADHD for ADHD Speaks those who have lots to say often become tongue tied. But, when we ask them to respond to a specific question on ADHD, they can’t seem to stop talking.
So since we want to hear and share your voices often, for the next several months CADDAC will be sending out different questions over our social media platforms and through our subscriber mail out systems, twice a month.
All you have to do to have your voice heard is to simply send an e-mail with the question and your written responses to resources@caddac.ca. Or join the discussion on our Facebook page.
We won’t add your name to the message unless you specifically instruct us to do so.
By sending us an e-mail with your response you will be giving us permission to share your message on our web site and over our social media platforms.
Here are the first two questions,
If you want to respond with an audio or video recording here’s how,
Send your video and audio clips and written stories via our WE TRANSFER LINK
Instructions on how to upload a video via WeTransfer
Send us all the responses you want!
Please add your voice to the ADHD Speaks campaign!
Heidi Bernhardt
About 75 people attended the live show featuring Patrick McKenna on Saturday night and if the laughter and tears was any indication everyone had a great time. Interestingly about two thirds of the audience were not conference attendees, which was unexpected but great bonus because it meant that we were reaching even more people in nova Scotia. The improve group was a blast. People were in stitches. I laughed so hard tears were running down my face. Patrick’s featured presentation “Is it me or the ADHD?” was inspirational and obviously hit home for many of the attendees. There was much nodding and also some tears in the audience. A young man pulled us aside at the end saying he wished he could stay and chat with Patrick but had to head out. He shared that he and his Dad attended with his Mom's insistence, so he was not too happy about attending. But, after hearing Patrick speak, so much had resonated with him that he now knew that he needed to think long and hard about getting an assessment making some serious changes. I guess we can’t ask for more of an impact than that!
Heidi Bernhardt
We’re just back from our 10th annual conference which was held in Halifax this year. As in past years the conference received an abundance of positive feedback with attendees commenting on the superb quality of speakers, organization and opportunities to interact with ADHD experts. They also told us how remarkable it was to be in a room filled with others who understood what they were going through and who “got ADHD”.
I was stopped in the halls by many people thanking us for bringing the conference to Halifax this year sharing that conferences of this caliber rarely occur on Canada’s east coast. Due to our generous sponsors, one being the Nova Scotia Ministry of Health and Wellbeing, we were able to reduce the cost of registration significantly this year, but even so, we received more requests for sponsorship than in past years. CADDAC sponsored all that asked, more than 20 attendees who we eager to attend but could not afford the fee.
In all, we had 175 attendees at the conference which is quite a good turnout especially for a smaller city. Our one regret is that only a few educators attended even though specific content for educators was included in the schedule and the conference was promoted throughout all school boards in the four east coast provinces. We were able to make some contacts during the conference which may result in our returning to Nova Scotia to provide educational sessions to individual school boards - always an added bonus.
One of the attendees was kind enough to express her feelings to me, which I think sums up many of the comments I received over the two days. She shared that she had been a little nervous about attending a two day conference after having worked all week, worrying that she would be exhausted by Saturday night, but instead found herself energized and could not wait to return on Sunday morning to learn more. She was excited to share what she had learned and would be passing on the information with as many others as she could.
Heidi Bernhardt
