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Firstly, I would like to thank everyone who has sent an e-mail or tweet to their elected official through CADDAC’s online advocacy campaign. To-date, 178 e-mails have been sent through our Ontario campaign and 289 through our national campaign as well as countless tweets. More are being added every day. A special thanks to those of you who have taken the extra time to share your personal thoughts and stories in the e-mails to your elected officials. It is these personalized e-mails that touch politicians the most. 

I would also like to encourage those of you who have not yet contacted your elected official and Minister of Education through this quick and easy tool, to please do so.  Since CADDAC has a newsletter following of over six thousand, we sincerely hope to see many more e-mails sent.

I would also like to encourage all of you to share this information with your contact lists. Please access E-mail text to share, which will provide you with an e-mail to send to your friends, family and colleagues. Until those in a decision-making position, understand that their constituents actually do care about students with ADHD, things will remain the same. 

At the launch of this campaign CADDAC reached out to every Ministry of Education across Canada except for Quebec. CADDAC is in the process of hiring a bilingual employee and is searching for Quebec partners to assist us in advocacy efforts in that province.    

To-date six of the twelve ministries contacted have replied to our e-mail, Nova Scotia, Manitoba, North West Territories, Yukon, Saskatchewan, and Ontario. Of these all six have agreed to meet. We have already met with representatives of the Ministry of Nova Scotia and have meetings booked with the Ministries of North West Territories, Manitoba, Saskatchewan. We are waiting for the meeting times to be set for Ontario and Yukon.

During our calls we expect to discuss ways in which Ministries can improve teacher training in ADHD, ensure that students with ADHD are receiving the resources they require and increase ADHD information on ministry web sites and other platforms to ensure that ADHD is recognized as a serious learning risk. In addition, during these calls we are gathering information on the unique process each province uses to flag students with special needs, when and how they develop individual learning plans for these students and how students with ADHD fare in their process. We are also asking about the role of parents in developing individual education plans.

Due to a media release sent out on January the 21st four media interviews occurred. Interviews with Global News Radio 900 CHML Hamilton, CBC Vancouver, CHEK News Victoria, and a free lance journalist in Alberta resulted in news stories and a live news radio interview.   

When our Ministry meetings are completed CADDAC will send out another media release summarizing the meetings and comparing provincial supports for students with ADHD.

CADDAC has also sent out a request to ADHD medical professionals and ADHD support groups across Canada asking that they share the ADHD Right to Learn campaign information far and wide.    

Please take a few minutes to help us advocate for students with ADHD across Canada by sending an e-mail or tweet to your elected official and passing on the ADHD Right to Learn campaign information.      

Warm regards,

Heidi Bernhardt

CADDAC Founder and Director or Education and Advocacy

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

Written by Heidi Bernhardt R.N.

Question 1

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

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

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

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

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

Written by Heidi Bernhardt R.N.

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

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

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

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

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

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

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

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

Warm Regards,

Heidi Bernhardt

Written by Heidi Bernhardt R.N.

Click here to download the blog in PDF format.

What exactly is this new “quadmester” system?

Instead of two semesters there will be four semesters in this 2020/2021 school year in Ontario. Two subjects will be taken per semester with each semester lasting approximately ten weeks. Students may choose in school learning or remote learning before each quadmester. If students choose in- class learning versus complete remote learning, they will be in school for approximately 2.5 hours per day, two days out of five one week and three out of five the next week. After their in-class sessions they will be expected to complete their day learning online. The days of the week that they are not in school will be spent in online learning.     

How might these changes impact our students with ADHD?

There may be a slight benefit for students with ADHD in this quadmester system because they will only need to focus on two courses at a time, rather than four. This means less juggling of multiple assignments, which is a challenge for many students with ADHD and executive functioning impairments. A more concentrated learning schedule will require a faster moving curriculum which depending on the student may be a benefit or drawback. Some students will find it difficult to keep pace requiring additional time to process and integrate new concepts. Others with ADHD who find classes too slow and boring may actually do better when classes move at a quicker pace. However, this faster pace will mean that if a student misses a day or two due to illness, they will most likely become overwhelmed fearing that they will never be able to catch up.

For most students with ADHD the expectation that they sit and listen to lecture style teaching for extended periods of time with minimal breaks will cause a problem. In addition, many of our students need to move frequently which will undoubtedly be even more restricted than usual. This will further reduce their attentional capabilities and may lead to more shifting of position, tapping, squirming etc., causing them to be unintentionally more disruptive. Also, the new schedule of moving from in-class learning to online learning at the end of the day and through the week will be difficult for students with ADHD. Consistency of routine is a necessity for those with ADHD.

Tips for students with ADHD and their parents on navigating this new quadmester system.

What You Need to Know

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

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

More Facts:

Current Research

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

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

Why Should Parents of Children with ADHD Know About Autism?

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

ADHD, Autism and Schools

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

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

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


For more information please access these resources

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

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

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

Background

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

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://news.fiu.edu/2019/04/raising-a-child-with-adhd-costs-five-times-more-than-raising-a-child-without-adhd-study-finds/132270

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

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