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:

• Build awareness about ADHD issues;
• Build relationships with candidates who identify themselves as being interested in these issues;
• Determine commitments for action on ADHD issues should the leader or candidate form the next government; and
• Move forward with actions that leaders and candidates pledge during the campaign when the next parliament begins.

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.

• Will your party agree to develop a national task force to look at the far reaching socioeconomic costs of ADHD and what can be done to improve outcomes for those with ADHD?    

• What will your party do to ensure that primary care physicians, as well as paediatricians and adult psychiatrists, are adequately trained and compensated to diagnose and treat ADHD?

• Will your party improve access to essential treatment options for families impacted by this disorder?    

• Will your party ensure that students with only ADHD are identified as students with the right to receive special education resources and classroom accommodations?

• How will your party solve this lack of knowledge and understanding in educators, and train them on proper strategies and accommodations for these students?

This is a follow-up on an earlier post that informed you that CADDAC and CADDRA sent a joint letter to Senator Munson and Minister Lebouthillier in early February of this year, stating that the Canada Revenue Agency (CRA) appears to be restricting access to the Disability Tax Credit (DTC) for those impaired by Attention Hyperactivity Deficit Disorder (ADHD) and other neurodevelopmental disorders (e.g. Autism).

In this letter CADDRA and CADDAC recommend that:

1.That the Disability Tax Credit be more easily accessible to significantly impaired individuals with ADHD and their families to assist in the immediate provision of evidence-based support and care, as well as the long-term support provided by the Registered Disability Savings Program (RDSP).

2. That the government recognizes and accepts the expertise of qualified health care practitioners who complete the Disability Tax Credit application for their patients.

3. That the Minister of Finance revises the Disability Tax Credit eligibility criteria so that impairments in problem solving, goal setting and judgment need not be present together to establish Disability Tax Credit eligibility and that a greater recognition of executive function deficits be acknowledged.  

4. That a CADDRA representative be invited to sit on the Disability Advisory Committee.

Since that time CADDAC and CADDRA received responses from the Minister of National Revenue and a response from the Minister of Finance, Minister of National Revenue to the chair of the Senate Standing Committee on Social Affairs, Science and Technology acknowledging receipt of the letter and requesting recommendation be sent to the Disability Advisory Committee.

The full report from the Disability Advisory Committee has recently been released.

Access a summary of information pulled from the report that would be of interest to individuals and families affected by ADHD and professionals working in the field HERE 

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.

The BC Standing Committee of Children and Youth is holding public consultations on the assessment and eligibility process of children and youth with neuro-diverse special needs. 

CADDAC wanted to bring this to everyone's attention quickly since time is very limited and the voices of those interested in ADHD need to be heard. The deadline for all input is Friday, June 7, 2019 at 5:00 p.m. You will notice that ADHD is not even listed as an example which is quite concerning since ADHD is the most prevalent neurodevelopmental disorder seen in children.   

This was just brought our attention by a parent who is presenting to the committee. If only a few people present on ADHD, children and youth with ADHD will again be ignored when government decisions are made. Unfortunately the committee is only looking for submissions by BC residents so CADDAC cannot send in a submission.

https://www.leg.bc.ca/parliamentary-business/committees/41stParliament-4thSession-cay

If you are interested in participating through a written, video, auditory submission or to speak at a public hearing please access, https://consultations.leg.bc.ca/Submission/Create?cons=ChildrenandYouthwithNeurodiverseSpecialNeeds

If you need their assistance, please contact the Parliamentary Committees Office at 250-356-2933 (toll-free in BC at 1-877-428-8337).

There are facts on ADHD and an abundance of ADHD information on our web site that can assist you with your submission, but if you would like CADDAC’s assistance in developing your submission please contact advocacy@caddac.ca

Warm regards,

Heidi Bernhardt    
 

Although I was well aware of the OHRC’s new policy I watched both training session videos from start to finish. I strongly recommend that anyone interested in the issue of accessible education in Ontario for students with ADHD, or any other disability, view these videos. They take a total of 85 minutes to watch. Cherie Robertson, OHRC Senior Policy Analyst and the author of the paper, does a great job of explaining the points covered in the paper. She also answers questions from the audience. ADHD is specifically discussed two separate times during the presentation.

These are my important take always from the presentations:

1. A disability is an expected variant in the human condition not an anomaly to normalcy.
2. The process that the education provider goes through to explore accommodation options is as important as the accommodations themselves. The request for accommodations cannot be refused without an extensive process to look at possible accommodations before accommodations can be denied. The process must be documented.
3. Educators must accept requests for accommodations in good faith unless they have a legitimate reason to doubt the request.
4. The education provider is entitled to ask for medical documentation to substantiate the need, but the documentation should not be used as a way to question or second guess the need. Asking for a diagnosis is not acceptable.
5. Requests for retroactive accommodations should be accepted in good faith. To refuse will put the education provider in violation of the code. The request by the student should be done as soon as possible and medical documentation needs to be provided, but the institution must consider the request. In some cases the request may be impossible to meet due to the length of time that has passed (the course may no longer be available), but all possibilities must be explored.
6. Institutions are required to cover the cost of the documentation that they are demanding.
7. If documentation takes time to obtain accommodations must be implemented while waiting for the testing and/or documentation.
8. A school cannot jump to the conclusion that a request for a certain accommodation will impair academic integrity. An entire process of reviewing options and academic integrity must be undertaken. An array of possible evaluation accommodations must be reviewed.
9. Before a student’s behaviour is sanctioned the education provider has a duty to inquire about a disability, or if aware of a disability must consider if the actions of the student were caused by the disability. They must evaluate whether accommodations for the disability have been put in place, if they were put in place in a timely manner, and if they are sufficient. In other words, is the behaviour due to the duty to accommodate not being met?
10. If the education provider cites health and safety risks as a reason for exclusion of the student, such a risk must be clearly demonstrated and not just anticipated. Also, accommodations must be reviewed. Are they in place and implemented? Are they effective and were they put in place in a timely manner?
11. The Commission is aware that schools are excluding students (asking them not to attend school) rather than going through a formal process of suspension or expulsion. Under the Safe Schools Act, the principal has the power to exclude, however it was stressed that a rigorous process of evaluation of accommodation must occur. The education provider must inquire if the student’s needs have been met to the level of undue hardship which is very difficult to reach. They must also look at what is triggering the behaviour.
12. It is the education providers’ duty to be proactive and learn about the OHR’s code. They cannot claim ignorance.
13. The OHR’s Code prevails over the Education Act when they are in conflict. The example of, “Categories of Exceptionalities”, were used to drive this point home. It was stated that the Commission views the categories as being under-inclusive. Under the OHR’s code any student with a disability, whether listed in a category or not, has the right to accommodation.

The videos can be accessed on YouTube:

The paper can be accessed: http://www.ohrc.on.ca/sites/default/files/Policy%20on%20accessible%20education%20for%20students%20with%20disabilities_FINAL_EN.pdf

 

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:

• Private tutoring and other learning services,, summer classes, computer software
• Lost belongings and school supplies requiring replacement
• Extracurricular activities from which they were dismissed and missed lessons and activities after parents had already paid fees or purchased equipment
• Higher rates of car accidents resulting in costs for damaged vehicles, fines, tickets and increased costs of automobile insurance
• Higher rates of delinquency resulting in costs for legal defense
• Loss of parental income due to being fired and changed job responsibilities, missed work and additional childcare expenses
• Increased costs for the treatment of parent's mental health concerns
• It was also noted that caregivers also experienced increased socio-emotional burdens including strained relationships between parenting partners, difficulty engaging in pleasurable social activities, high parenting stress, and substance or alcohol problems

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 Laurie Monsebraaten ,the Toronto Star Social Justice Reporter who wrote the article.

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 4^th 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:

1. Officially stating that students with ADHD are to be recognized as students with a disability resulting in learning and self-regulation impairments and by providing examples of diverse ways these students can express these special learning needs.
2. Providing and encouraging education for educators on ADHD learning and self-regulation impairments, appropriate classroom accommodations and teaching strategies.
3. Ensuring that sufficient funding for additional resources is provided to support an inclusive classroom model.
4. Holding boards accountable for providing additional resources to classrooms with a heavy load of special needs learners.
5. Truly holding boards accountable for meeting these students’ needs.
6. Holding boards accountable that the funding they receive for special education is actually spent on special education.

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.

We get it! Sharing a video of yourself talking about ADHD on ADHD Speaks is scary!

Many parents who talk to us at length, sharing their frustrations and heartaches, are afraid to speak out about ADHD in public.  They have let us know that while they would love to share their stories online they are concerned about their child who just wants to stay under the radar. This is totally understandable. Kids with ADHD get centered out far too often and not for their successes – most often just because they have ADHD. So who would want to make their child the poster child for ADHD.

We have a solution!

• Send us an audio tape using only your first name, an anonymous name or handle.
• Audio tape your child or adolescent sharing their feelings about ADHD using another name, or their first name only.
• Send us your written story with no identifiers, or just ask us to remove your name.
• Send us a picture of a poster or video of a series of posters that you/your family, or your child, have created with a message about ADHD.
• Record your video from the neck down, the back of your head, the wall – whatever makes you feel comfortable.

Be as creative as you like! We want your stories anyway you want to share them!

The long term goal is that eventually everyone will feel comfortable talking about ADHD, but as parents and grandparents of kids with ADHD and adults with ADHD we understand that speaking up about ADHD is scary.

"ADHD Speaks" is a marathon and not a sprint. CADDAC understands that it will take time to make this happen and we want to let you know that we are in this for the long haul.

CADDAC is committed to changing the understanding and perception of ADHD.

We hope you’ll join us on this journey in any way that makes you feel comfortable!