On May the 6th CADDAC posted on our blog and sent a mass mail out alerting those interested in ADHD about the BC Standing Committee of Children and Youth’s public consultation on the assessment and eligibility process of children and youth with neuro-diverse special needs.
There is a deadline of June 7th to submit written submissions, but there’s still a bit of time should you be interested.
On June the 4th the Select Standing Committee on Children and Youth held it’s fourth and final public consultation in Surrey BC. You can now access a draft of the transcript of this day’s meetings. (You can scroll through the transcript to isolate the stories on ADHD, however it should be noted that ADHD was also mentioned several times within presentations by school and mental health service providers.)
The meeting was opened by the chair, Nicholas Simon’s stating that the committee was undertaking a project, on children and youth with neurodiverse special needs, including those with autism, FASD and developmental delay. You will note that ADHD was not included in his list of neurodiversities although it has the highest incident rates. It was also not listed on the website page outlining the call for public consultations. This lack of inclusion of ADHD was mentioned by several of the presentations that occurred on that day and some stated that they had almost not attended due to this oversight, to which Mr. Simon responded that it was not their intent to exclude ADHD.
Mr. Simons the Chair of the committee explained their role as, “We’re not a decision-making body. We’re an all-party committee that is charged with improving our understanding of the child-serving system and making recommendations to improve those services, to inform the public and legislators about the child-serving system — child welfare, neurodiversity. That’s our goal: to inform the people who make the decisions.”
For those of you who may not have the time to read the entire transcript I have selected quotes that cover most of the important points made by the presenters, parents and professionals, who spoke about ADHD.
“I have a paper trail of assessments, reports, recordings and emails from various pediatricians, psychiatrists, mental health specialists, educators and school administrators that could probably stretch around a full city block at least one time.”
“Even though we were — the word I use is — armed with this level of professional medical support, my son was denied access to testing, supports and services in two different elementary schools, two different school districts and two different school-based resource teams.”
“My position is that ADHD is a neurological disorder that directly impacts a child’s ability to learn at the same level as a neurotypical child. By classifying it as an R designation and trying to treat the traditional undesired behaviour that we associate with ADHD, we are not offering our children the same access to education. ADHD requires its very own special needs category within the Ministry of Education so that the necessary supports and one-on-one assistance can be made available to our children in the schools.”
“My experience with the letter of advocacy for our school and also the plan that was laid out for us was a lot of doors closing in our faces, because there just really was, at that time, no support services that were geared toward children who were diagnosed with ADHD. That was through the ministry of child and family services. We were denied access to Sunny Hill development services.”
Question by the Committee – “Would you say that, with ADHD, that your child did not get the support that children with autism got? Is this how you are feeling? Or, like, the school system is not equipped to deal with it?”
Response “I think, actually, both. I can be, oddly enough, quite diplomatic when we talk about this. I see two things. I see ADHD as something that falls under the category of an R designation, which speaks to moderate behavioural challenges in the classroom, whereas autism has a stand-alone category within the ministry of special needs. By having a stand-alone category in the Ministry of Education, special needs, it allows for supports to be put in place that directly speak to the needs of that child and the disorder and disability that they are experiencing. By classifying it as an R designation, they are very loosely attempting to protect the rights of the classroom, the learning environment and the child, but we’re not speaking directly to the educational supports that are needed.”
“Those were some of the challenges with the assessment process. I know that’s the focus of this, but I would like to just bring up a few other issues that exist around FASD and, really, ADHD. They go hand in hand; they’re so similar. That would be that there’s no funding. The big comparison that all families in this world see with ADHD and FASD is: how come families who have children with autism get funding, yet kids with FASD and ADHD don’t?”
“But since he started kindergarten, I quickly discovered that ADHD children were not recognized as students with exceptional learning needs, and therefore they do not receive any extra support from the schools.”
“What was disappointing was that not once did the letter mention the word ADHD. You asked for our input on children and youth with neurodiverse needs but did not mention ADHD as an example. This lack of recognition from the governing bodies makes it impossible to get any supports from the local schools. So do parents of ADHD children feel that their child is given equal learning opportunities and access to other resources in schools? No. Not currently.”
”In fact, when I wrote a letter to my son’s principal requesting support from the integration support teacher, since my child struggles with emotional and self-regulation needs, her response was this: “The integration support teacher, although often at support-based team meetings, case-manages and supports students with ministry designations.”
“If, as a society, we continue to ignore the needs of ADHD children in schools, we are going to have lower academic achievement with higher drop-out rates amongst ADHD youth. They are unlikely to obtain post-secondary education. They might not be able to hold down a job in their adulthood. They might suffer from depression, anxiety and substance abuse. They may take part in risky behaviours and get in trouble with the law.
We can change this by approaching ADHD as a neurological condition — which it is. Educators, schools, school districts and the Ministry of Education should approach this as special needs. Provide funding for children with ADHD. Provide proper and mandatory education to educators based on research-based studies and effective teaching strategies, accommodation and greater understanding of this neurological diagnosis.”
“No, there is no designation for ADHD,” which means there is zero support. There’s this discorrelation between yes, there’s funding but not for kids with ADHD. No matter who I go to, they’re like: “Contact your school district. Contact the local schools. Speak to the principal.” But we do not get that. So the Ministry of Education, the governing body, says: “Yes, contact the local schools.” No, because ADHD is not a designation from the ministry, we can’t do anything. There is this disconnect.”
Comment by the Committee – “But we’ve heard from someone else that there was a designation within the school system for their ADHD child.”
Response – “If they are just diagnosed with ADHD, they don’t get anything. It’s not a designation. ADHD, in the current model, is not a designation.”
Question by the Committee – “So your child receives absolutely no special…?”
Response – “Nothing. Even if you request it, there isn’t.”
Recommendations made by a parent – “Create a position of a caseload worker that specializes in neurodiversity and mental health in children to assist families in navigating the system so that the burden doesn’t fall to the parents. This would be a go-to person, and this person would not be the social worker. Change the ministry’s special needs categories to include ADHD. It’s a neurodevelopmental disorder, like autism spectrum disorder, but currently doesn’t qualify for extra funding.”
“When we look at the cost of untreated ADHD, which is a significant concern, it’s one of the most debilitating disorders that somebody can experience. People with untreated ADHD are more likely to have depression and anxiety, more likely to fail a grade, more likely to fail to complete high school, more likely to have an unwanted pregnancy, to contract a sexually transmitted disease, to cause a car crash, to get divorced, to be incarcerated, to experience problematic substance use disorder and — although I haven’t seen research about this — I am sure, more likely to be a victim of our overdose crisis.
The cost is huge to our society, never mind to individuals’ families and the people who love them, of our inability or our unwillingness to deal with this very common condition. I ask you, as representatives of the government of British Columbia: how much research do we need to see and how much suffering do we need to see …love them, of our inability or our unwillingness to deal with this very common condition. I ask you as representatives of the government of British Columbia: how much research do we need to see and how much suffering do we need to see before we change these odds for children like mine?”
“We know that out of 12 ministry categories, ADHD is on the list, but it’s part of the block funding. So families are often told there is no funding for ADHD, even though we know that it’s part of the block funding. To access inclusive education, a student needs to be assessed, they need a diagnosis, they need to meet the criteria of one of the 12 ministry designations, and they need to have an IEP. So you can start to see the catch-22. How do you get the IEP when you aren’t assessed? How do you get the assessment if you don’t have the diagnosis? Unless you have a very proactive parent and supportive school system, a lot of people never get into this loop.”
“Students like my daughter, who has the ability to completely blow apart a classroom on a bad day, is a fairly high priority for services. Students who have the inattentive subtype of ADHD, who are quiet and daydreamy — these are more likely to be girls — are much more likely to fly under the radar, but they have just the same risk profile as any other kid with ADHD. I really worry about those children.”
“The Ministry of Education may provide assessment, may provide some supported education, does not provide behavioural interventions, support training or cognitive behavioural therapy. That’s not their job. The Ministry of Health may provide the diagnosis, may provide the medication. With a very few exceptions in a few health regions, there are no services for children with ADHD. I hope nobody is telling you otherwise, because it’s not true”.
Presentation by Vancouver Coastal Health – “Then the other piece is that it’s often really inequitable. So if you wanted…. I don’t know if you’ve had parents of kids with ADHD here, but ADHD can have profound functional impairment. So you have a kid, and they’ve got severe ADHD. They can’t attend class. They’re oppositional. There are huge behavioural problems. And basically, everyone has to pray that the diagnosis at the end is not ADHD because they’re not going to have funding or support. Hopefully, you know, we’ll just hope that it’s something else, which is outrageous. It’s not how diagnosis should be used. It leads to these huge inequities between who gets services and who doesn’t. It’s not based on function.”
“We’ve had the school look us point-blank in the face and be, like: “You need to go back to the pediatrician and tell them you need this diagnosis so she can get funding.” I’m, like: “I’m a professional. I’m not a medical professional, but I guarantee you my doctor’s not going to put this kid on the autism spectrum if that’s not where she belongs.”
“It’s really just the opportunity to say…. You know, I have a friend whose child is on the autism spectrum. Quite frankly, my twin B’s symptoms are far more significant than his symptoms are. We’re entitled to nothing. I paid privately for an occupational therapy assessment for twin B. We pay privately for her to go to occupational therapy every two weeks for an hour a day. We pay privately for our girls to get clinical counselling to try and help them cope and learn behavioural strategies and do CBT.”
You can access all four meeting transcripts here.