As reported in a previous blog, on December the 4th 2017 CADDAC met with Minister Fleming and his staff to discuss ADHD in BC schools, our recent policy paper and the highly anticipated new BC Special Education guidelines, placing ADHD in a standalone category.
Here is a summary of what the Minister and his staff shared with CADDAC.
The guidelines in special education have been delayed due the change in government and a full review going forward on Kindergarten to grade 12 funding. CADDAC was assured by the Minister that they intend to move forward with ADHD as a standalone category which would allow students with ADHD to receive IEPs. During the process of reviewing funding the Ministry will be reaching out to stakeholder groups after they complete their financial consultation. They will be informing CADDAC on a timeline for submissions. Deputy Minister Laura Sampson will be staying in touch to up-date CADDAC on these issues.
If you are interested in ensuring that changes to the BC Special Education Guidelines adding ADHD as a category move forward, you need to:
Recently the College of Physicians and Surgeons of BC (CPSBC) developed and published guidelines for safe prescribing of drugs with potential for misuse and diversion. These guidelines were developed for the prescribing of opiates, through a lens of addiction. Unfortunately ADHD stimulant medications were also included in these guidelines. While CADDAC and CADDRA applaud guidelines for opiates, yearly urine drug screening and/or pill counts for patients receiving ADHD medication have no benefit and have not been implemented by other provinces. If a physician suspects their patient, any patient, has an issue with addiction, protocols for this are already in place. Including ADHD stimulant medication in these guidelines is unnecessary, ill-informed and will deter the treatment of ADHD in British Columbia.
What will this mean to those being treated for ADHD?
From now on, those receiving ADHD medication will be required to present themselves with 24 hours’ notice to a designated lab for a yearly routine drug screen. This drug test will screen for opioids, amphetamines (found in ADHD amphetamine medication), and THC (found in cannabis). Screening cannot be done for Methylphenidate based medication. Other drug screens can be requested as well. The patient will be given a special sample bottle, must go into a room without their wallet or coat and produce a sample. Alternately, or in addition to urine tests, physicians are being asked to conduct random pill counts requiring the patient to bring in the prescribed pills for counting on a specific day.
In addition, physicians will now be unable to prescribe stimulant medication used to treat ADHD with anxiety medications (benzodiazepines) or sedative hypnotics used to treat sleep problems. And certain pain medications will not be prescribed to a patient taking stimulant medication.
As well as the stigmatization and shaming of patients with ADHD and their families this will result in a decline in the number of family physicians and paediatricians willing to prescribe stimulant medication. These guidelines promote the perception that prescribing stimulant mediation is a problem with similar risks to prescribing opiates. There is no data or research to back up this perception. We have already seen a steep decline in the number of stimulant ADHD medications being prescribed in BC resulting in more untreated ADHD. The resulting side effects and socioeconomic costs of untreated ADHD have been well documented.
An added result of these biased guidelines will be increased costs to BC healthcare for unnecessary tests and additional physician visits. For additional details access BC Advocacy
What can you do about it?
The Ontario election is quickly approaching so this is the opportune time to make your voice heard. You MPPs think that their constituents do not care about ADHD because they do not hear from families with ADHD, but they do hear from parents of children with Autism.
Is this true? Are you uninterested in ADHD?
Are your MPP and those running in your constituency aware of government policies that impact families with ADHD? For instance, are they aware that students with ADHD in Ontario do not qualify for recognition as exceptional learners? This identification would give them the same rights to special education resources as students with other neurodevelopmental disorders such as learning disabilities and Autism. Are they aware of the extensive wait lists and additional costs of receiving an ADHD diagnosis and treatment? Are they aware of costs to the health, child and youth, social service and justice systems in Ontario when we do not diagnose and treat ADHD?
For more information on ADHD advocacy in Canada access our past Blog.
CADDAC is asking parents, extended families, adults, health care providers and anyone interested in children and adults with ADHD to contact their MPP and those running in their riding.
Your MPP is required to meet with any constituent that requests a meeting.
We need you to do at least one of these things before the June election:
CADDAC has developed Election Documents for you to use, points for you to make and questions to be asked when meeting with your MPP or attending a town hall meeting. Template letters are also available to assist in your letter writing.
Children with ADHD require specialized parenting. Most parents parent somewhat inconsistently, but this is not good enough for children with ADHD and Oppositional Defiant Disorder (ODD). The more severe the ADHD and ODD is, the greater the necessity for specialized and consistent parenting.
When one spouse has undiagnosed and untreated ADHD or another disorder of self-regulation the consistent, unified and specialized parenting required becomes very difficult to implement. The parent with the self-regulation disorder will find it very difficult to be consistent in their parenting. Issues with emotional dysregulation will most likely also be apparent in parents with these untreated disorders. This will make it difficult for them to remain calm and model appropriate self-regulation when the child displays unwanted behaviours caused by their own regulatory issues. This can cause significant issues in the parent/child relationship as well as the spousal relationship.
Parents must be able to accept the diagnosis of ADHD and agree with the concept that ADHD is a medical neurodevelopmental disorder. ADHD cannot be trained out of the child. The parent you cannot “fix” the child, rather the parent will need to adapt and change how you are interacting with, supporting and advocating for the child.
These children will require far more and closer parental monitoring due to their attention dysregulation, impulsivity and hyperactivity and their impairments in executive functioning and self and emotional regulation. They will drift off task or into unwanted behaviour more easily and lose track of time.
Parents will need to learn as much as they can about ADHD, so they can understand their child. They will need to learn why the child is having difficulty doing what is being asked of them and at the same time unable to resist doing things they should not be doing. Parents will need to re-frame their thinking of common ADHD behaviour from being a result of lack of willpower, motivation or childhood manipulation, to being caused by neurodevelopmental impairments due to a medical disorder.
Parents must create supportive environments by reducing conflict as much as possible and put structures and supports in place to offset impairments. Rules will need to be very clear and consistent with immediate positive rewards when followed. Parents will be required to be proactive rather than reactive, anticipating times, and situations that trigger behaviours and have a plan in place for when behaviours happen.
It is common for the majority of ODD negative behaviours to occur in the home and with the parent who is most familiar. It is important that parents do not take the child’s behaviours, moods and ODD, disrespect personally.
Be aware that some of the things you are asking your child to do may not be in their control. Insisting on this can lead to decreased self- esteem, anxiety, withdrawal, acting out and depression and loss of motivation. Research has shown that before a child with ADHD reaches 12 they have received more than 200,000 negative messages.
Parents will need to spend time learning about their child’s medical and psychological profile. They will need to understand their child strengths and needs before good parenting practices can be out in place. Once this is done, strategies can be put in place to help the child improve their daily functioning. Daily effort in teaching and practicing executive functioning skills can help the child improve on these skills, however, it will take a great deal of consistent effort on the parents part.
Due to all of these parenting requirements parents can become overwhelmed and exhausted needing to take time out to regroup and replenish their own strength. Having support and respite system in place for parents of children with ADHD can help the well-being of the entire family.
For more than a decade now CADDAC has been advocating with the Ministries of Education, Health, Child and Youth, Justice and Social Services. Our policy papers have been sent to all ministries across Canada impacted by ADHD, and we have personally met with many of these ministries.
When CADDAC meets with government officials to advocate for needed changes to improve the lives of families with ADHD we are told that change will only happen through the interest of our elected officials. In other words, the bureaucratic arm of the government will rarely effect change unless told to do so by the political arm of the government.
However, when CADDAC meets with the politicians we are told that they have no reason to be interested in ADHD since their constituents have shown no interest. They report that their constituents do not speak with them about ADHD, but they do hear from families of children and adults with other neurodevelopmental disorders, such as Autism.
Since CADDAC receives countless calls from parents extremely concerned about the current situation we know that you are indeed very interested, but this is not being shared with your elected officials. You are interested in government policies that impact your children with ADHD in our schools. You are interested in the lack of accessibility to ADHD assessment and treatment options. You are interested in the fact that youth as well as adults with ADHD are highly represented in the prison population yet we lack screening and treatment of ADHD in most correction facilities across Canada.
Unless educated by their constituents, our MPPS fall prey to the same misinformation and misconceptions as the general public. They view ADHD it as an insignificant issue rather than the most common neurodevelopmental disorder impacting the academic success and mental well being of our Canadian children today.
This year we have a unique opportunity with the upcoming Ontario election. We can use this platform as a pilot to see if parents, grandparents, extended family, educators and medical professionals working in the field of ADHD are interested enough to let their voices be heard.
Let’s make ADHD an Ontario election issue for families impacted by ADHD!
For those of you outside of Ontario, there is no reason for you not to use the same information to assist you in letting your elected official know that you are indeed interested in ADHD.
What Can You Do To Help?
Did you know that your MPP is required to meet with any constituent that request a meeting?
Did you know that governments estimate that every letter they receive on a topic represents an additional 50 to 60 people also concerned about that topic who have not written a letter?
If you have an interest in ADHD, CADDAC and other Canadian ADHD support organizations need your help!
Advocacy efforts cannot succeed unless the voices of those like you are heard – we need all those with an interest in ADHD: parents, grandparents, adults with ADHD, extended family members, educators and medical professionals to do at least one thing to add their voice to the effort.
Please access information on or web site Campaign Page to find information that CADDAC has developed to help you in this effort.
You will find talking points and questions to share with your sitting MPP and those who will be running for election in your riding. You can use the same information to ask questions at town hall meetings.
CADDAC will be asking Ontario parties to answer a list of questions on ADHD. We will be posting their answers later in February for everyone to see. CADDAC will also be asking to meet with the party leaders to present this information and ask for their commitment to families impacted by ADHD.
Warm regards,
Heidi Bernhardt
On December the 4th 2017 CADDAC met with Minister Fleming and his staff to discuss ADHD in BC schools, our recent policy paper, and rumours that the highly anticipated new BC Special Education guidelines, placing ADHD in a standalone category, would not be released.
Here is a summary of what the Minister and his staff shared with CADDAC.
The guidelines in special education have been delayed due the change in government and a full review going forward in K to 12 funding. CADDAC was assured many times that changes to the new Special Education Guidelines, incorporating the changes in DSM 5 resulting in the inclusion of ADHD as a standalone category, are not being considered for removable. They are not looking at preventing this due to the restoration of old language of class composition in the teachers’ contract. There has been no conversation on their part regarding limiting designations of special needs students. They have been focusing on hiring more educators to meet these students’ needs.
During the process of reviewing funding they will be reaching out to stakeholder groups after they complete their financial consultation. They will be informing CADDAC on a timeline for submissions.
Deputy Minister Laura Sampson will be staying in touch to up-date CADDAC on these issues.
The Ministry is aware that their web site information on ADHD for educators is out-dated. They are in the process of developing up-dated information.
Since 2010 CADDAC has shared our concerns about the direct substitution of methylphenidate ER-C, a generic medication, for OROS® methylphenidate (Concerta) with Health Canada. This was done through documentation, caregiver and patient survey results and several face to face meetings.
A Canadian research paper reviewing data on this issue, was recently published in the Clinical Therapeutics Journal on drug therapy. The new paper, “Differences in Adverse Event Reporting Rates of Therapeutic Failure Between Two Once-daily Extended-release Methylphenidate Medications in Canada: Analysis of Spontaneous Adverse Event Reporting Databases” looked at treatment failure adverse events of generic versions of OROS® methylphenidate (Concerta).
The research paper reported that a 10-fold higher reporting rate of therapeutic failure adverse events was found with the Canadian generic product, methylphenidate ER-C (Teva product) as compared to OROS® methylphenidate (Concerta). Although adverse events are more typically thought of as additional unwanted effects of a drug (e.g. a headache or rash), if a product fails to produce its expected intended clinical effect, or fails to produce its clinical effect for the intended duration, there may be an adverse outcome for the patient, including an exacerbation of the condition for which the product is being used. The Health Canada Guidance on Reporting Adverse Reactions to Marketed Health Products provides the example of a patient whose condition is well-stabilized, but deteriorates when the patient changes to a different brand or receives a new prescription as an example of an unusual failure in efficacy, which is a reportable adverse event.
Additionally, the study compared Canada-US data and demonstrated that this 10-fold increase in Canadian therapeutic adverse events was very similar to data seen with a US generic product by Mallinckrodt. This US product's bioequivalence status has been removed by the FDA and it is being considered for further regulatory action. Adverse consequences for patients, such as disruptions in academic performance, school suspensions, and onset of adverse social behaviors, showed similarities between the US and Canadian generics. The Canadian study data reported that “Impacts on social functioning, such as disruption in work or school performance or adverse social behaviors, were found in 22.2% of cases.” US reports for the methylphenidate ER generic product identified adverse impacts on social functioning in more than 30% of cases.
The paper also highlighted differences in the generic medication from the brand Concerta Plasma (blood) concentrations. The generic product concentrations peaked approximately 2 hours earlier and declined more rapidly than those of Concerta. As one would expect, adverse event time of day data, showed “overdose like” symptoms to be more common in the morning and lack of efficacy to be more common in the afternoon. Methylphenidate ER-C, was reported not to be effective throughout the duration of the day in 42.6% of Canadian cases, with this early loss of efficacy occurring in the afternoon for 64.3%. Signs or symptoms of too much methylphenidate exposure were also reported in 13.5% of the cases with 58.1% occurring in the morning. Therapeutic failure occurred within one week of starting treatment with methylphenidate ER-C in 72.1% of the cases.
CADDAC’s experience was included as well, “Since the market approval of the first generic drug in Canada, the Centre for ADHD Awareness Canada (CADDAC), a patient advocacy group, has received reports of issues with generic methylphenidate ER medications, including shortened or reduced clinical effects and adverse events.”
The paper concluded that “The results of the current study are consistent with a growing literature pointing to a potential safety issue with the methylphenidate ER-C generic product. Taken together, this information suggests that an investigation should be conducted by Health Canada, to evaluate the potential differences between methylphenidate ER-C and OROS® methylphenidate. If important differences are identified, this would further suggest that the bioequivalence metrics currently used to support the interchangeability of OROS® methylphenidate with methylphenidate ER-C may not be adequate.”
Earlier this year Health Canada (HC) released a notice regarding consultation on the proposed modification to bioequivalence standards for this type of medication. In September, CADDAC contacted HC expressing our pleasure with this review, but asked whether any decisions made would also impact medications that had already been approved for bioequivalency. This is information is important because the medication for ADHD in question would fall under this category. If this was not to be the case, CADDAC wanted to know whether labeling informing patients that this medication was approved under old guidelines would be required. CADDAC has yet to hear back from Health Canada.
This question is being asked and answered in our recent policy paper, Inequitable Access to Education for Canadian Students with ADHD.
Also access our Media Release and a Summary of our key messages.
During the morning of October the 3rd, CBC's "The Current" hosted the call in show "Is the public school system working for kids with special needs. They asked for people to continue contacting them about this topic.
I'd like to encourage everyone to contact CBC and share your thoughts and the experiences of your children with ADHD in Canadian school systems. There was very little said about ADHD during the 90 minute show.
You can listen to the full episode here, http://www.cbc.ca/radio/thecurrent/the-current-for-october-2-2017-a-national-call-in-special-1.4317150
You can share your thoughts here, http://www.cbc.ca/radio/thecurrent/contact via e-mail, Facebook or twitter.
We need to get our voices out there!
If this topic is near and dear to your heart we need to hear your story!
CADDAC continues to receive calls on a fairly consistent basis from parents across the country expressing concern about their child’s education. Many have tried for years to work with their child’s school to put strategies and accommodations in place. They are extremely frustrated about the lack of recognition that ADHD can significantly impact a child’s learning and the void in training for educators.
If these issues are of interest to you, you need to add your voice to our 2017 ADHD Awareness Month Campaign and advocacy efforts. While Awareness Month will be the launch, we anticipate this campaign to extend throughout the next year. We are aware that most often we are contacted about the worst situations and rarely hear about the successes. So, we also want to hear your positive comments.
Although our knowledge on how ADHD impacts learning has expanded significantly in the past twenty-five years, little has changed in how schools, school boards and Ministries of Education address student’s learning needs. While some educators have great insight into why and how students with ADHD are impaired and strive to support them, others still label students with ADHD as lazy, unmotivated and defiant. School boards and teacher education programs continue to spend very little time training educators and administrators on ADHD even when on average there are at least 2 to 3 children with ADHD in every classroom.
For the past twenty years CADDAC and its representatives has been meeting with Ministries of Education attempting to bring change to the way students with ADHD are recognized, understood and serviced. Ministries of Education that identify students with disabilities as exceptional learners continue to systemically exclude ADHD in their categories of exceptionality. However, whichever provincial special education system is in place, the continued lack of training for educators is a commonality across all provinces.
So, during this year’s ADHD Awareness Month, in October, CADDAC will be launching a campaign to bring more awareness to the impact of ADHD on learning, the lack of educator training, the lack of school services for students with ADHD, and the continued stigmatization of students with ADHD is some schools. At the same time we would like to highlight schools that do a great job of supporting our kids with ADHD, because we know that it can be done.
After meeting with Ministries, boards and government officials for years only to be told that the continual concern we hear from parents about their child’s learning and their frustration at the schools’ lack of understanding, knowledge and services is just hearsay, we think it is about time they hear it from you.
In preparation to the launch of this campaign CADDAC is requesting that you send us your stories. They can be brief or as lengthy as you like. Tell us about your experiences, good and bad. Tell us about your efforts to be heard, your frustrations and your successes. Let us know about the teacher who really “got your child” and made your child’s year. Essentially we want to hear whatever you would like say on this issue.
We completely understand that this can be a very emotional issue for some, but we do ask that you not name individual schools or boards. Since these stories will be collected, collated and eventually shared with policy makers you may wish to send your letter anonymously. If this is the case, please do not place your name at the bottom of your document. However, also remember that a signed document holds more weight. Also, it is about time that we openly address these issues and refuse to accept the stigma that many feel is still attached to ADHD.
Please send your stories to advocacy@caddac.ca either in the body of the e-mail or as an attachment.
Stay tuned for additional up-dates on this campaign through or blog post, web site or through our e-mails.
Please also join the discussion on this topic though our Facebook page.
Warm regards,
Heidi Bernhardt
By Russ LeBlanc
As we travel down the road of life, you’re bound to hit a few potholes… make that some VERY BIG potholes. Logic tells us, after experiencing these types of potholes, we should pull over, take some time to access the damage, get things fixed then resume the journey. As for me, after experiencing one of these large life potholes, I’ve been known to take my hands off of the wheel, turn my focus to the rear-view mirror and start cursing that damn pothole as I quickly head to the nearest cliff. So why am I “different”? Well, after years trying to figure that out, I finally happened upon the answer… I was living life with ADHD! I now felt LIBERATED and I wanted to tell my family, friends, and even total strangers! I quickly learned that finding out you “have” ADHD is usually a good thing. “Telling” people you have ADHD is usually a not such good thing.
No matter if you look at your ADHD as a good, bad, or indifferent “thing”, the fact remains… there’s a lot of misinformation being circulated “out there” about the so called “disorder” and the people who state they have it. As a result, many ADHDers’ choose to keep the condition hidden (and in some situations, they made the right decision) as they try to lead a “normal” life (or at least the perception of a “normal” life). All this isn’t easy because it’s tough being a round peg when life is a square hole.
As for me, I’ve had the opportunity to work with CADDAC for several years and for that I am thankful to be working with people who “get it”. There’s no need to “pretend”. ADHD is real and the people who have “it” are not insane, we just have a different thinking process (compared to “normal” people). Over those years, and during many a CADDAC conference, I keep hearing the same thing from those attending. “It’s great to be in a room where I can be myself!” These people wanted this feeling to last forever!
In getting back to the initial paragraph, my life hasn’t been one big pothole. I have the pleasure of been married for a long, long time to my high school (and very understanding) sweetheart and we have been blessed with two successful siblings along with one impressive grandchild plus (OK, so I’m partial). I’ve also been able to pursue one of my childhood passions… broadcasting. I’ve had a pretty impressive career (at least on paper) and as a result, some people refer to me as a “communications expert”. Perhaps it’s my ability to help solve (usually, other people’s) problems with a creative communication based solution? Perhaps. Speaking of which, I’d like to tell you about something brand new. It’s something I’m very passionate and excited about… it’s “Club ADHD”! Club ADHD consists of three elements: a Facebook group page, a Twitter account, and a podcast and it’s all presented by CADDAC! It’s a place created for people with Adult ADHD... a place where we can be ourselves! As your (ADHD) host, I look forward to help create an atmosphere where we all don’t have to pretend. Together we can share our ADHD good times and “challenging” times. In doing so, we all might be able to learn a thing or two. Who knows? We may even create an idea to help replace society’s misinformation (about ADHD) with real facts! Note: Part of my “job” is to help create a relaxed atmosphere. A place to enjoy and learn from.
So why not take the next step and visit the CLUB ADHD facebook page to find out more about a place where we ADHDers’ can be ourselves? Just think, the thought alone could help make a person want to start filling potholes!
