People for Education recently released a report on Special Education in Ontario. To access the report, please click on this link:
http://www.peopleforeducation.ca/pfe-news/new-report-shows-special-education-challenges-continue/
This report focuses on several issues, most of which CADDAC and undoubtedly many other organizations with an interest in education, have frequently heard from concerned and frustrated parents:
CADDAC strongly agrees with all of People for Education’s recommendations for changes:
With Ontario’s upcoming election, parents who have an interest in these concerns may wish to draw their candidate’s attention to these issues and ask what their take is on special education services within Ontario.
You can access information on how to do this here:
http://adhdawarenessweek.ca/en/?page_id=325
http://adhdawarenessweek.ca/en/?page_id=202
A new tool for parenting adopted and special needs children, created from Alice Home’s work is accessible at www.adoption.ca/special-needs-parenting. On this site you can access several video presentations looking at information gathered by Dr. Home’s research study as well as two monograms or booklets that will be of interest to parents with children with disabilities.
What’s Going On? Disentangling children’s disabilities and getting support , an overview of what the study found parent’s experiences were while trying to access services for their children.
And
Advocacy for children with disabilities: Issues and strategies , an overview of the issues that parents had with advocacy and how to implement advocacy strategies.
We hope you find these valuable resources useful!
CADDAC
CADDAC’s ADHD FAQ SHEET
CADDAC has compiled a list of the most frequently asked questions about ADHD. We hope this list can help as a resource for anyone looking for answers on ADHD. Feel free to share this resource and let us know what you think, we love you feedback.
What is ADHD?
Scientists agree that ADHD is a medical neurobiological disorder. It is an illness or deficit of the nervous system most often due to genetic or biological factors. ADHD is a chronic condition that can present at all levels of severity and rarely occurs by itself. There are three core symptoms: the inability to regulate attention, the inability to regulate activity, and difficulty with inhibitory behaviour resulting in impulsivity.
However, difficulty with regulating emotions is often an issue as well. It is important to note that symptoms of ADHD can vary from day to day and hour to hour, and while many people may exhibit these symptoms, it is the degree of presentation, the inability to regulate them and a level of impairment, that results in a diagnosis.
How is ADHD treated?
How can I get a diagnosis?
The diagnostic procedure for children, adolescents or adults should be comprised of:
Medical history
An extensive interview with the patient and parents or significant other and the administration of various symptom rating scales - ideally more than one scale to confirm the results. The process includes evaluating symptoms and their degree of severity, while at the same time excluding any other possible reasons for these symptoms.
For a diagnosis to be made, symptoms need to be seen in more than one setting. This is necessary, because symptoms may be due to conditions in a particular environment, rather than being due to a medical condition.
During a complete diagnostic procedure, screening should be performed for other conditions that exist with ADHD called “co-morbid conditions.” Very few people have ADHD without any other co-existing conditions. Some of the conditions that we routinely see with ADHD are: learning disabilities, anxiety, depression, and Oppositional Defiant Disorder (ODD). Diagnosis can be made by a physician, psychiatrist, or psychologist knowledgeable about ADHD.
Psychologists and clinics charge a fee above the provincial coverage. Some physicians or psychiatrists may also have minimal office charges as well.
When you call offices for an appointment, these are some key questions to ask:
Are they accepting new patients?
How long is their wait list?
How much to they charge over the provincial coverage
Does this physician do follow-up care?
You will want to ask your family doctor (or even just a walk in clinic) to fax them referral to get the process started. It would be a good idea to call the doctor’s office in a few weeks to make sure that the referral has been received. Wait lists tend to be long and it would also be a good idea to follow up in a few months to see how things are moving. Sometimes they may have cancellations and can fit you in sooner than expected.
How can I get accommodations in school?
One option is to have your child assessed for ADHD by a developmental Paediatrician or a child and adolescent psychiatrist which are both covered under OHIP. We recommend that a specialized physician always do a thorough assessment for ADHD to assess the symptoms that fit the ADHD criteria and to rule out any physician conditions that may mimic the symptoms of ADHD.
Another option is to have your child receive a psycho-educational assessment from a qualified psychologist. This is a comprehensive testing that also testes for learning disabilities as well as ADHD symptoms. The psychologist will write specific recommendations for accommodations in their report if Learning Disabilities and/or ADHD are diagnosed.
This comprehensive report may assist with the student being recognized as an exceptional learner and developing an Individual Education Plan (IEP); however, before giving the report to the school, find out what your school board's policy is on identifying students as exceptional. Some boards and Ministries of Education recognize ADHD, while, unfortunately, others do not.
Some schools may offer psycho-educational testing through their school psychologist. While this can be a great help to some families financially, we urge parents to pay for testing out of pocket if at all possible. The diagnosis paperwork is therefore YOUR property and you have control of the information.
Private psycho-educational assessments frequently cost at least $2,000 since psychologists are not covered by provincial health care coverage. Some private insurance plans may cover a portion of this fee. This fee can sometimes be split under more than one family member or the testing can cross more than one year's allowable coverage.
Psychologists cannot prescribe medication but can offer other treatments and therapy; however, if medication treatment is desired the child or adolescent will also need to be seen by a physician or psychiatrist.
What are symptoms of child/adolescent ADHD?
Inattentive Symptoms: Easily distracted, difficulty focusing, daydreaming, difficulty remembering verbal instructions, misunderstanding instructions, difficulty understanding others’ cues, difficulty making transitions between activities, difficulty with organizing belongings and work, losing things, easily overwhelmed, and trouble beginning tasks and completing projects.
Hyperactive Symptoms: fidgeting and squirming excessively, difficulty remaining seated, talking excessively and at inappropriate times, difficulty with quiet activities, risk-taking behaviours, and frequently touching objects. Possible symptoms of child/adolescent impulsivity include: interrupting conversations, blurting out answers in the classroom, beginning work before instructed, disturbing others, seemingly excessive frustration, taking others’ belongings, difficulty waiting in line, difficulty taking turns, and making impulsive choices.
What are symptoms of adult ADHD?
Possible symptoms of adult ADHD include: not being able to focus on tasks that are dull, easily distractible, difficulty paying attention to detail, hyper-focusing on something you may find stimulating, difficulty and possibly frustration with transitions in activities (especially when in hyper-focus), forgetting things, losing things, fidgeting, internal restlessness, procrastination, interrupting conversations or blurting out random or inappropriate thoughts, making impulsive and/or risky decisions, difficulties with organization, difficulties finishing projects but frequently starting them, impatience, low frustration tolerance, mood swings, tuning out when spoken to, difficulty realizing how your behaviour affects others, difficulty with self-awareness, problems with self-esteem, problems with social interactions and relationships, excessive career/job changes or loss, problems with time management, and difficulty paying bills on time and managing money.
For more information, please visit our website www.caddac.ca
Follow on Twitter: @CentreforADHD
Fan us on Facebook: facebook.com/CADDAC
This is another perfect example of how the media jumps on anything about ADHD that is controversial.
http://nypost.com/2014/01/04/adhd-does-not-exist/
Harper Collins the publisher is doing a superb job of selling the book even before it is released and the media falling right in line with their marketing plan. Again the hugely frustrating thing is that almost every article and blog about this book does not allow for a rebuttal from the other 99.9 percent of medical experts to comment on some of the sensational statements that are obviously meant as a selling tool for the book. Unfortunately the author and publisher, as well as the journalists who buy into these tactics, totally disregard the harm they do by using sensationalism without balancing it with decades of scientific research. How many children and adults who may have received help will go undiagnosed because this misinformation is being promoted?
As Dr. Kenny Handelman stated in his blog post in January: http://www.drkenny.com/adhd-does-not-exist. I was also reluctant to comment on this fearing I would drive more attention to this book, but taking the high road in the past has not helped to decrease misunderstanding and stigma around ADHD in the past. ADHD professionals understand, as should parents and adults, that making a diagnosis of ADHD means ruling out any other potential reasons for symptoms of distractibility and hyperactivity, as much as it does confirming that the symptoms are due to ADHD. This is a very basic part of the assessment process. But, of course this is fact is not included in these articles.
If you come across any articles promoting this book and its messages, I encourage you to send your comment so people can “Get Real” about ADHD.
Shire Canada ADHD Scholarship Program
Deadline for Applications is April 15, 2014
Shire Canada will award up to FIVE scholarships to residents of:
who have been accepted to or are enrolled in a program at a Canadian accredited two- or four-year college, university, trade school, technical school, or vocational school located in the afore-mentioned provinces for the academic school year 2014-2015.
The recipients must be diagnosed with ADHD and under the care of a licensed health care professional for their ADHD, but do not have to be receiving medication treatment in order to be eligible.
Each scholarship recipient will receive an award of $1,500 and one year’s worth of ADHD coaching services from the EDGE Foundation. Winners will be notified on May 25, 2014.
To apply, please visit their website at: http://www.shireadhdscholarship/com/CA-EN/default.aspx and either apply online or print and apply via form, which must be sent in.
CADDAC's President, Heidi Bernhardt, responds to: CBC's: Are we overdiagnosing ADHD?
On January 16th 2014, Jian Ghomeshi interviewed Alan Swartz who wrote the New York Times article “The Selling of ADHD” and Dr. Gabor Mate in a segment entitled “Are we over diagnosing ADHD?”
I was extremely frustrated with this media interview on CBC and this is not the first time that CADDAC has called CBC on their lack of Canadian ADHD content. As with other interviews in the past, no Canadian ADHD expert researcher or clinician was included in the interview to balance out the points that Alan Swartz made about the supposed US situation. CBC then compounded their error by using Gabor Mate to further sensationalize the issue.
You might surmise that no other Canadian expert was available, but it seems that responsible journalism was not the aim here. Neither CADDRA nor CADDAC was approached requesting a possible Canadian expert to add a clinical Canadian perspective to the interview. Several misleading statements were made during the interview but no reputable Canadian expert was there to correct them.
Particularly inaccurate were Mr. Swartz’s comments about parents of ADHD children. He stated that pharmaceutical companies targeted parents, mothers in particular as being the “impressionable ones,” in their quest to sell more medication. He describes his theory thusly: if these mothers are made to think that their children have a “real” medical problem that a pill can fix, it relieves the pressure of having to look at their own parenting or agonizing about being at fault for their child’s difficulties.
In the 20 years that I have been interacting with parents about ADHD I never have come across one that is thrilled with the prospect of putting their child on medication. Parents may be relieved that a reason for the disabling symptoms has been found, and that there may be help; but thrilled about giving their child medication, never. For the vast majority of parents this is an agonizing decision, and not lightly made. I have also met very few mothers of children with ADHD who do not, for at least a period of time, worry that they were inadequate in their role and caused their child’s impairments, or made them worse, including myself.
Alan Swartz does admit that there are some legitimate cases of ADHD that may need treatment, and some of the parents may actually mean well; but he also states that only the most extreme cases on inattention, hyperactivity, and impulsivity were ever meant to be diagnosed and treated. My own three children were never on the severe end of the ADHD spectrum, but were still impacted by their ADHD, as was our entire family. Our journey began thirty years ago, when there was little awareness surrounding ADHD and many medical professionals knew little about the disorder. It took several years and many professionals to finally get the diagnosis correct, but by then we had already struggled and gone through a great deal of pain for many years.
During this interview, misleading statements are made, allowing the audience to interpret things about an ADHD diagnosis that are false. Mr. Swartz states that medical practitioners and parents do not look at other potential causes for difficulties with focusing. He ignores medical guidelines that state that all other potential disorders whose symptoms may mimic ADHD must be ruled out when assessing for ADHD. Guidelines further state that ADHD symptoms must be severe enough to cause impairment, and evident in more than one setting, for ADHD to be diagnosed. Mr. Swartz describes diagnosable inattention as a child who can’t do anything for more than a few seconds. This statement indicates how little he really knows about ADHD since children with ADHD can hyper-focus for hours at a time, if they find something engaging and stimulating.
Do pharmaceutical companies attempt to promote their products? There is no denying that they do. They are for-profit companies, after all. This is why advertising of medication is not allowed in this country. Thankfully, Jian did make this point himself, although very briefly. Physicians are courted by “Big Pharma” for every drug they manufacture; this is a fact. But, we trust them to use their training and judgement to keep this in perspective when treating all other conditions with medication. Why should treating ADHD be any different?
Are there physicians in the US who are misdiagnosing children, adolescents, and young adults with ADHD because parents want their child to be better behaved and get better grades? If so, that is a shame, and should be dealt with. Are university students in the US and here in Canada misusing ADHD medication to “pull all-nighters” trying to finish excessive work-loads or boost their grade average? Certainly, and perhaps universities should address why these students feel the need to do so. Yes, these issues need to be discussed; but ADHD is a medical condition and has the right he be treated as such when discussed in the media. In my personal view, media should be aiming to provide up-to -date medical information backed by scientific research, but that may be naïve. At least CBC should allow for a balanced Canadian medical perspective rather than contributing to the continued controversies and misinformation surrounding ADHD for ratings.
In the past twenty years, I have worked with many dedicated ADHD medical practitioners; and have spoken to thousands of parents desperately struggling to find the best care and treatment for their children with ADHD who do not take this disorder lightly. Therefore, I find it insulting that many journalists would rather sensationalize the topic than ensure that an accurate Canadian medical perspective on ADHD is available for their listeners.
To listen to the interview access
http://www.cbc.ca/q/blog/2014/01/16/are-we-overdiagnosing-adhd/
If you feel inclined to comment to CBC
http://www.cbc.ca/help/contact/programming_feedback
Although I searched, I was unable to access a published comment to the NY Times article by a Canadian ADHD expert, but here two interesting comments from Dr. Thomas E. Brown:
http://www.drthomasebrown.com/another-open-letter-editor-new-york-times/
Sincerely,
Heidi Bernhardt
President and Executive Director
Canadian Association of ADHD Awareness (CADDAC)
"Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has." Margret Mead
What a fitting quote to start today's blog post on ADHD advocacy, below we have included a link for a fantastic article from Dr. Kenny on ADHD Advocacy.
Dr. Kenny's ADHD Advocacy Toolkit
We are very grateful to Dr. Kenny Handelman for addressing the issue of ADHD advocacy this week in his newsletter. Although individual and systemic advocacy may be one of CADDAC's most important roles it is very difficult to engage people in these efforts. To a parent, spouse or friend, etc. individual advocacy for their loved one, although possibly intimidating in the beginning, is a natural instinct. Carrying the message to the next step of systemic advocacy can be too intimidating for most. Dr. Kenny is right when he says that you must start with your own story, but openly talking about your family's weaknesses and struggles, often not very pretty, can make you feel very vulnerable. Even more stressful can be the fear of exposing your child to criticism or bullying.
Dr. Kenny is also right about the misinformation, misunderstanding and stigma that continues around ADHD. This will only decrease when people begin to openly challenge these myths and provide the "right" up-to-date, medical information to take the place of misinformation.
Speaking to your child's teacher, coach, a relative or friend about ADHD and giving them the facts is a fabulous first step. Your are educating and decreasing stigma one person at a time and hopefully that one person will go on to share the information with others. However, the next step to systemic advocacy can be even more important. When we at CADDAC meet with elected politicians or government administrators our first major hurdle is convincing these decision makers that ADHD is an important issue for their constituents. We hear the same statement time after time, our constituents do not talk to us about this issue, so why should we be interested.
If as research tells us, at least 5% of the population has ADHD, and only their parents and close extended family contacted their elected officials about this issue, politicians would begin to take notice. If medical health care providers, educators, coaches etc. also let their voices be heard ADHD might be in the news as often as autism.
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.
Last year for 2013 ADHD Awareness week a web site was developed for the purpose of growing awareness and advocacy efforts. A host of information and easy to use tools have been created to assist you in writing letters, and possibly meeting with your elected officials.
Please access http://adhdawarenessweek.ca/
According to the group Children and Adults with Attention Deficit-Hyperactivity Disorder (CHADD), about 40% of children with ADHD continue to experience symptoms in adulthood. The long-term effects of this can have great impact. “Compared to teens and young adults without ADHD, those with ADHD were:
http://psychcentral.com/news/2012/12/31/many-adhd-teens-carry-problems-into-adulthood/49865.html
Dear Parents and Guardians,
As one of CADDAC's advocacy initiatives, every time a new medication option for ADHD is approved by Health Canada, we contact the appropriate government agencies, when the opportunity exists, to inform them as to why this new option should be made accessible to children and/or adults with ADHD. Our view is that, since treatment for ADHD is not a "one size fits all" scenario, as many options as possible should be accessible. Unfortunately, certain governments only makes it possible to formally voice our opinion on medication treatment (although the issue of availability of proven non-medication treatments will also be voiced through advocacy efforts later this year).
With that in mind, we ask you to please take a few minutes to fill out a brief survey. The information gathered will be used to assist us with providing input to governments in support of publicly funded access to a new medication for ADHD.
We would greatly appreciate you completing our survey through this LINK. If you know any other parents or guardians that could answer the survey please forward the link on to them as well.
Thank you for your ongoing support.
Here's a link to some helpful information on CADDAC's website from our 2012 College and University ADHD Awareness Campaign.
Please feel free to send this along to anyone in, or thinking about post-secondary schooling.
