The committee met at 9 a.m.

[N. Simons in the chair.]

N. Simons (Chair): Good morning, ladies and gentlemen and fellow committee members. The Select Standing Committee on Children and Youth is very pleased to be here in Surrey on our final day of public consultations.

My name is Nicholas Simons, and I’m the Chair of this committee. We’re very pleased to be on the traditional territory of the Coast Salish peoples — in particular, the Kwantlen, Katzie, Semiahmoo and Tsawwassen First Nations and the Kwikwetlem and Qayqayt people.

On behalf of the committee, I’d like to thank everyone who has been able to meet with us so far and the people who are about to meet with us today. When we were deliberating on the topic of our special project, we recognized that in this sector, it’s difficult for people to find time sometimes. They’re very busy people, and we recognize and acknowledge the sacrifice people make to let us know their views on this important subject. I’m really pleased that we chose this area of study to help inform the government on where improvements can be made.

To that end, we’re undertaking a project, as I said, on children and youth with neurodiverse special needs, including those with autism, FASD and developmental delay. We began our project, our hearings, listening to the Ministry of Children and Family Development, the Ministry of Health and the Ministry of Education to learn about how supports and services are currently structured within those particular ministries.

Today is our last public meeting. Over the last few weeks, in addition to being in Victoria for the final week of session, we held hearings in Terrace, Fort St. John, Prince George, Kelowna, Castlegar, Nanaimo and yesterday in Victoria itself. We listened. We heard from parents and caregivers, service providers and other organizations about how the assessment and eligibility processes can be improved. We’ve received a number of written comments since we opened consultation mid-April. The final day for submissions is Friday, June 7. For more information, that can be accessed at the Legislative Assembly website.

To ensure that we hear from everyone, we’ve just made it a ten-minute presentation with five minutes for questions. We have a full day today. It’s being recorded and transcribed. Our meetings are broadcast live on the Legislative Assembly website, and I do know that there are people listening at home.

With no further ado, I’d like to just acknowledge we have working with us Steve Weisgerber and Simon DeLaat from Hansard. And we know they represent a bunch of people working back in Victoria making sure we say what we mean. Mary Newell and Jennifer Arril from the Clerk of Committees office — we thank them for their work.

At this point, I’d like to ask my fellow committee members and colleagues, from all sides of the House, to introduce themselves, starting with Teresa Wat.

T. Wat: Good morning. My name is Teresa Wat. I’m MLA for Richmond North Centre.

L. Throness: I’m Laurie Throness. I’m MLA for Chilliwack-Kent.

M. Stilwell (Deputy Chair): I’m Michelle Stilwell, MLA for Parksville-Qualicum and Deputy Chair.

R. Singh: I’m Rachna Singh, MLA for Surrey–Green Timbers.

R. Leonard: I’m Ronna-Rae Leonard. I’m the MLA for Courtenay-Comox on Vancouver Island.

N. Simons (Chair): Let’s get started. First up today on our list is the Surrey district parent advisory committee and Dean McGee.

Welcome to the committee, and thanks for being here. I’ll give you a two-minute warning. Is that okay with you?

D. McGee: Yes.

N. Simons (Chair): I’ll try not to be rude.

D. McGee: I don’t need to put a timer on, then.

N. Simons (Chair): We’ll do the timer. Thank you. Go ahead.

Presentations on Children and Youth
with Neurodiverse Special Needs

SURREY DISTRICT
PARENT ADVISORY COUNCIL

D. McGee: Thank you all for holding this series of meetings. With no disrespect to our Coast Salish friends, I feel like I’m welcoming you to my home, as you all come here to Surrey.

[9:05 a.m.]

The question that was put out was: “Can you tell us your experiences?” I am the acting president of the Surrey district parent advisory council. I’m here representing the DPAC. But I’m here mostly to tell my own story, because that’s what I can tell.

As I say, you’ve come to my place. My story starts 25 years ago, in this building. I was part of a church that would use a room in this building for their church services. I was married in this building. My start in working with children starts when they looked around the church and said: “Well, there’s that young, newlywed couple. Let’s get them to teach the kids.”

I don’t think this room was actually here 25 years ago, but the room next door we would sometimes use. What I learned, early on — my early experiences with kids…. We would have one or two kids that had ADHD — well, one or two kids that was diagnosed with ADHD. I’m sure there were more.

We would have a kid that had Down syndrome. Now, when somebody with Down syndrome walks in, or when the parents say, “Here’s my kid,” everybody recognizes that. It’s a visible thing. What I’ve learned is that people are very willing to help somebody that has a visible disability. A few families were picnicking at a lake, and the mom turns to me and says: “Watch this.” There are two kids out at the swimming platform, and absolute strangers are helping her son onto the swimming platform because they could see, “Oh, here’s a Down syndrome.” He’s actually an adult by now. “Here’s somebody that needs help.”

A lot of what we’re talking about here — autism, FAS, these kinds of things — are not necessarily visible. People’s experience is trying to get help — trying to find out what kind of help our kids need. I would talk to other Sunday school teachers and hear — this is, again, going back to the ’90s — the story of the place that had one kid with autism. “Oh my. Can you imagine? They have a kid with autism in their group.” Obviously, this was the kind of autism that showed up in very disruptive ways, so people would talk about that.

Fast-forward a lot of years later, and my wife and I ended up adopting a sibling group. We have full custody of a sibling group, and one of the first things was: “Well, they have to go through assessments and find out what’s up with them and what kind of help they need.” The kids were ten months, 2½ years and 4½ years, at the time — 12 years ago.

Our oldest — it was thought that maybe she did have autism. She was 4½, and she was basically non-verbal. Between the foster home and moving into our home, she began speaking — maybe not exactly at a five-year-old level, but she became a lot more verbal rather quickly. The professionals said it probably wasn’t autism. It was probably the home environment, but it probably wasn’t autism if she started speaking so quickly.

[9:10 a.m.]

Over the years, she started in school. She did all right. She definitely needed extra help, but lots of people need extra help. She was definitely not very typical socially. It wasn’t until she was 14 that we actually had an autism diagnosis. There were teachers, over the years — basically, the whole of the elementary school years — that…. All they could really do was a little bit of learning-support help. “Well, she’s a little behind in reading, so we’ll give her a little bit of extra help in reading.”

The fact is her form of autism…. She’s very quiet. In an elementary school classroom when you’ve got a whole diverse room of 25 or so kids that are here, there and everywhere, the quiet one that’s not bothering anybody is not really a first priority. A couple of teachers actually thought she didn’t even need any LST help.

Then you get to high school, the first visit with the special ed teacher and the BASES teacher at the high school…. The BASES teacher, this particular teacher, pinpointed and put her in the social group right away with kids that were mostly diagnosed with autism. He worked with autistic and special needs kids so much that he could pick out that this is the group she belongs in, even if it’s not autism. Even if it’s something else, she belongs in this group. She’s doing all right. She’s in grade 11, and there’s still some question whether she will be on the Evergreen program or the Dogwood program for grade 12.

Our youngest was diagnosed with ADHD fairly early — grade 1 — because he was very disruptive in class. It showed (1) something has to be done and (2) this looks a lot like ADHD. We think he may be on the FAS spectrum. I actually met a FAS researcher who tells me that it’s not necessary to have the birth mother say: “Yes, I was drinking during pregnancy.”

They can measure facial features. They can look at other things. We don’t actually have to have the birth mother say: “Yes, this is what happened during pregnancy.” But apparently, that’s still the standard in the province. I don’t know if that’s the province or Canada. There are four factors, and one is the parental admission.

That’s where he’s at. I looked at all sorts of information about ADD, and I’m trying to learn about that. I heard somebody say that there’s a saying that the pills don’t give you skills. There’s medication for ADHD, but kids and adults need to learn to manage their….

I was going to say behaviour. It’s not really that but to manage themselves in a way that if you’ve got something that needs to be done, you have to work on it. If somebody presents you with a great big thing to read, you say, “Well, I’m going to read one page at a time. I’m going to read five pages at a time,” because 189 pages or even 18 pages just looks like way too much.

I keep hearing from other people on our DPAC, people on other DPACs. You’ll meet a lot of great people today, and you’ll meet a lot of autism parents. I keep meeting autism parents at things like BCCPAC and other DPAC events. A lot of us get very involved in things like becoming DPAC chairs and running for trustee and things like that. In the end, I’ve actually got to know some great people. You’ll hear from more of us today.

N. Simons (Chair): Well, Dean, thank you very much. We have met wonderful people so far.

[9:15 a.m.]

I know that’s continuing today with your presentation. We really appreciate you taking the time and telling us a bit about your experience. It all helps us in our deliberations.

I’m looking to my colleagues for questions.

L. Throness: Thank you, Mr. McGee, for presenting today. Thank you for taking on a group of three siblings. That’s incredible.

I wanted to ask how…. So you were here 25 years ago, and you say you would see one or two ADHD kids in a group. Now, in your position on DPAC, how does it compare to today? What is your message to the committee today? What would you like us to take away from your presentation?

D. McGee: What I would like you to take away is the importance of assessments. I know some parents are negative about the idea of their kids being labelled, but the fact is, it’s hard to give kids help if we don’t know what kind of help they need.

With the reading I’ve been doing, I look and it appears that I tick a lot of the boxes for an adult with ADHD. It turns out there are no experts that deal with adults over 35. I learned that the day after my 50th birthday.

N. Simons (Chair): We found a place where that might happen, but you’ve got a good point there.

R. Leonard: Thank you very much for your presentation.

As a representative of the DPAC, I’m curious about the stance around inclusion in the classroom and separate schools. Where do you guys fit in that discussion?

D. McGee: Well, you can read my insert in the Surrey Now-Leader from a week ago. But overall, the concept of inclusion, the idea that every kid should be in their neighbourhood school and should be in the regular classroom…. There is room for pullouts for as simple as a little extra reading help or for a kid that just can’t sit still for a number of hours. So there’s room for pullouts and things like that. But yes, we need to see kids included in their neighbourhood school, as best possible, and with the supports they need.

T. Wat: Thank you, Dean, for sharing your story with us, and thank you for adopting three special needs children.

Am I right that I heard that you said your daughter was diagnosed with autism at the age of 14?

D. McGee: Yes.

T. Wat: You also talk about the need to make the assessment earlier. Given somebody like you, who is so well informed, how did you not, you know, send her earlier for assessment?

D. McGee: For one thing, we would ask the school about assessments with all three. They all had their own things, and there was a lot to handle. We did say we think something’s up. I would say that I think it looks like autism.

Surrey used to have a category, when they were advertising for special ed assistant positions, where they’d say autistic-like tendencies, where they may or may not have had an actual diagnosis but could say: “Hmm, we need to treat this one like it’s autism.”

The fact is she wasn’t a big priority for the school assessments. We did do a private assessment in 2014. Unfortunately, because of the school lockout, the teacher wasn’t available to fill out the teacher’s side of the assessments, so the assessment said: “Okay, well, there’s this and this. We could come back and visit it and see if it’s autism.” But at least, that gave us a little bit of extra help at the school. But yes, over the last four or five years, I’ve gotten a lot more involved because of my frustrations with the system.

N. Simons (Chair): Thank you very much, Dean. Really appreciate your time today. Your words have been noted, and we will deliberate on them. Thank you for being here.

We’ll move to the next witness. Thanks for coming.

[9:20 a.m.]

Let’s call Shannon McLay to the table to provide us your insight.

Thank you, Shannon. I’ll give you a two-minute warning, if that’s all right with you. I’ll try to be polite about it.

S. McLay: That’s fine. I’m just going to read what I have to present today, just because it takes the emotion out of the presentation.

N. Simons (Chair): Okay. We don’t mind emotion, though. It helps us understand the depth of the issue as well. So just go ahead.

SHANNON McLAY

S. McLay: On behalf of all the participants that are here today and the families and caregivers in our province whose lives are daily affected, and the children and youth who fall into the neurodiverse special needs category, thank you. Thank you for allowing us this very special opportunity to come forward and share our experiences with you today.

My name is Shannon McLay, and my son was diagnosed five years ago with ADHD combined subtype, significant general anxiety disorder and oppositional defiant disorder. To be honest, I really struggled these past few weeks with preparing for this moment today, not because I don’t have anything to say to the committee, but because I really just can’t figure out how to take the last five years of our journey and put it into a ten-minute presentation.

Like many others here today, and I’m sure that you’ve heard from in the past few weeks, 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.

Our official diagnosis was in November 2014, and upon my request, we were immediately referred to the B.C. Children’s Hospital mental health teaching clinic. After a series of assessments and interviews, we received a letter, dated February 2015, from B.C. Children’s Hospital mental health teaching clinic, advocating for an R designation, an individualized education plan and a psycho-educational assessment to help clarify a possible undiagnosed learning difficulty in the area of written output.

Even though we were, and 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 attempts at continued advocacy for support services, an actual designation and an IEP for my son over the next four years in elementary school was met with the following responses. “The wait-list for testing is very, very long. He would be lucky to get in before high school.” “The ministry is pulling away from designations, so we aren’t going to be assigning any more at this time.” “I’m pretty confident that your son’s poor written output is directly related to his lack of effort and cooperation when it comes to being asked to write. When this is compounded over the years, it can be quite significant.”

Not only did our education system neglect to recognize my son’s ADHD, but they also completely neglected to recognize his learning disability. By the seventh grade, I faced the harsh reality that no matter how hard I advocated for my son, he was never going to get put forward for testing at the school level, and I arranged for a private psych-ed assessment.

Four years after the original request of testing and supports from the B.C. Children’s Hospital — four full school years with no additional supports in place; four years of showing up, asking for help, sitting alone, often across the table from sometimes four or five school officials; four years of just not understanding why not one person would step forward and help us; four years of feeling like a complete failure as a parent; four years later — we had our additional diagnosis of dysgraphia, a written output impairment.

We are here now today with a Q designation in place, where we try and squeeze in a few accommodations here and there that speak specifically of how we would like teachers to respond to the behavioural challenges that are typically associated with ADHD. We have an IEP in place now that our school is probably about 60 percent in compliance with. To this day, the public school system has never once officially recognized that my son has a neurological disorder.

[9:25 a.m.]

As a parent, I’ve finally made the decision to pull my son’s academics out of traditional public high school next year. It appears obvious to me that this is the only way that he is going to get a fair chance at achieving a full high school diploma and have options available for college or university in the future.

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.

ADHD requires one-on-one daily support through the educational life of our children. I believe this looks like learning how to chunk work down — way, way, way down — into more manageable steps, assistance with knowing when it’s time to get started and, more importantly, when it’s actually time to stop. Our children need to be taught how and when to use organizational tools and how, when and what is socially acceptable behaviour for any classroom situation and honestly so, so much more. Although my son will never see the day in public school that this will happen, I’m standing before the committee today sharing my story and experiences with you because I would like to save the next family from the type of neglect that we’ve experienced at the school level.

If there’s time, and I feel like there might be, because I haven’t seen the….

Interjection.

S. McLay: There you go.

I actually do have a recording that I would like to play for the committee today which is, really, just a typical day of my son’s experience in school.

N. Simons (Chair): Before you do that, I’m just wondering if there is any way of doing that.

S. McLay: Yeah. Is that okay?

N. Simons (Chair): If you hold it up to the mike, and as long as we’re not breaching anyone’s privacy, go ahead.

S. McLay: With this recording….

N. Simons (Chair): Can you introduce it a little bit?

S. McLay: Yeah. There are no names mentioned in this recording. What it is, is that last year, in an effort to advocate for himself, my son took a recording of his classroom experience that he was going through on a daily basis — how he was being spoken to by his classroom teacher in front of a group of 25 to 30 other children. I’d like to say that it’s an isolated incident, but it’s not. It’s daily. And it’s not just this one classroom, one teacher. It happens on a regular basis.

N. Simons (Chair): Have you pursued your concern about that treatment of your child in the school with the education system?

S. McLay: I’ve pursued it with the school district that my son was in elementary school with. I was told that the ultimate decisions as to how my son’s information would be put forward would be the responsibility of the administrators at our school.

N. Simons (Chair): How long is the tape?

S. McLay: Two minutes.

N. Simons (Chair): You have two minutes.

S. McLay: Thank you.

[9:30 a.m.]

[Audio presentation.]

N. Simons (Chair): Thank you very much, Shannon, for sharing your experience and that of your son with us. You’ve helped us in our attempt to get a full view of things, so I thank you for that.

Any questions from committee members?

Well, there you go.

Oh, Ronna-Rae has got one.

R. Leonard: Just one quick question. You shared your experience with your son in the school system. Was he involved with the child development centres or early learning?

S. McLay: No. When we left the mental health teaching clinic at B.C. Children’s Hospital…. They really arm you with a plan of where you can receive support services within your community based on your diagnosis and their recommendations.

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. There just really were, 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. I think that’s the name. I’m sorry. I don’t have the report in front of me.

Yeah, there’s counselling. I’m not sure how many of you have a lot of experience with boys at the age of ten with ADHD, but sitting in a quiet room with floral print blankets is not an ideal way for them to come forward and speak to anybody about anything in regards to their lives or situations.

I took a parenting class that was recommended from the teaching clinic as well and went through a six-week expedited course on how to appropriately respond to emotionally charged behaviour in the household. But other than that, we were really sort of met with hands up: “We don’t have anything for you at this time.”

N. Simons (Chair): Rachna has a question.

R. Singh: Thank you so much, Shannon. Thank you for advocating for your child for so many years.

I hear your frustration. Would you say that, with ADHD, your child did not get the support that the children with autism got? Is this how you are feeling? Or, like, the school system is not equipped to deal with it?

S. McLay: I think both, actually. 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.

Do I believe that there is funding for educational supports to include ADHD children? I’ve been told that there is not.

N. Simons (Chair): Thank you so much for taking the time to come today. We really appreciate it.

We’re moving to the next witness, as we call them officially, the Centre for Child Development of the Lower Mainland — Dr. Brian Katz, Karen Edwards and Gerard Bremault.

Welcome to the committee and thank you for coming.

Just before you begin, I’d like to recognize a dignitary who entered the room — I call him that out of the Legislature; I have other names for him inside — Marvin Hunt.

Welcome to the committee, and thank you for coming. It’s nice to see you.

We’ll give you a two-minute warning when you have two minutes left. You’ll go eight minutes, then you’ll have two minutes, and then we’ll have five minutes for questions.

Thank you for being here. You have the floor.

[9:35 a.m.]

CENTRE FOR CHILD DEVELOPMENT
OF THE LOWER MAINLAND

G. Bremault: Thank you for welcoming us and giving us the opportunity, as many citizens across British Columbia have been provided through your Select Standing Committee on Children and Youth. We really appreciate that this is a matter of interest for the province of British Columbia.

I want to also acknowledge Rachna Singh. Thank you very much for being here on behalf of Surrey as our MLA from Green Timbers and for being part of the committee.

I did want to introduce myself. I am Gerard Bremault. I am the CEO of the Centre for Child Development of the Lower Mainland and our Sophie’s Place service, which is a service for children who experience abuse.

The Centre for Child Development is long standing and the largest child development centre in British Columbia. We were formed in 1953 by a group of parents as a charity, so we’re a registered charity. We provide a very wide range of services in a multidisciplinary, wraparound way for children and youth with special needs throughout the South Fraser region. Our primary funder is the Ministry of Children and Family Development.

That array of services extends out to over 3,000 children with special needs throughout the South Fraser region. We are the only out-patient medical rehabilitation centre that is accredited by the Commission on Accreditation Rehabilitation Facilities in western Canada to provide our type of medical rehabilitation services, which include psychology, developmental pediatrician, occupational therapy, speech-language pathology, physiotherapy, recreation therapy and a range of specialty services.

Sophie’s Place is also a multidisciplinary, wraparound service, including the RCMP, the Ministry of Children and Family Development and the Ministry of Public Safety and Solicitor General.

I wanted to provide that overview because this is a service that is, of course, deeply important to us and the parents who founded us and to the 160-plus staff who operate in over 280 locations every year, throughout all of our schools in this region providing school-aged therapies and providing early intervention therapies in people’s homes and in over 130 child care centres, in terms of supported child development and preschool services.

With that broad overview, I also want to introduce Dr. Brian Katz, who is our director of psychology and family services, and Karen Edwards, who is our director of occupational therapy. After I provide an overview and brief you on our presentation, they’re here to answer questions with me in further detail that might be of value to the committee.

I did notice in Hansard yesterday that you had spoken to Dr. Kelly Price. I just wanted, without repeating the comments that were made by Dr. Price, to endorse many of the comments that were made in regards to the emphasis on functional assessment as a means forward that may be of great help, as opposed to the current practice of assessment, as a way to ease the burden on families to receive the services that they need.

To put it in colloquial terms, it is not our finding or experience over the last 65 years that parents are going looking for a diagnosis of disability so as to label their children so as to make it more difficult for them in life. In fact, it is quite the opposite. Families are desperately looking for the support they need to address the functional challenges that their children experience.

That being said, in front of you today, we’ve summarized, at a macro level, some of the challenges we find at a broader level in this region. With your indulgence, I’ll quickly go through those.

One of the highlights, per page 1, is really the macro challenge we face in the South Fraser region of extraordinary growth in the past few years. As you are undoubtedly aware, Surrey and our region — including Langley, Delta and White Rock, but particularly Surrey and Langley — have grown at an outstanding pace of over 10.6 percent between 2011 and 2016, in the census period, compared with B.C. at 5.6 percent overall. Nearly 18 percent of that population are zero- to 14-year-olds. By 2021, Surrey’s population will be, essentially, 600,000.

Concomitant with that population growth is the growth of children with special needs. According to government sources, indeed our own Ministry of Children and Family Development, 41 percent or 26,544 of B.C.’s children and youth with special needs live in the South Fraser region.

I wanted to stop there. I won’t go through all the reading of all the report, but I wanted to read those elements out to you for the sake of Hansard because that is a stunning number of children and youth in this region who have special needs.

[9:40 a.m.]

The Centre for Child Development currently has the capacity to serve, essentially, 3,140 of those children and youth with special needs. Obviously, that is not the entire amount. That is roughly 12 percent of the number of children and youth with special needs who are in this region. As a result, wait-lists have been growing for some time, and there are children that either must forgo or wait for the help they need.

Now, the centre does acknowledge the significant support of the government of British Columbia to address these challenges. We are grateful for the support that we’ve received in the last year or so, where we’ve seen a 30 percent growth in that which we have received to be able to support our children and families. For that, we are very grateful. Understandably, though, given the big gap between the number of children that we’re able to currently serve, even with that support, versus the total population of children and youth with special needs, there’s still a great deal to do.

I would also draw your attention to page 2 of what we’ve put forward to you, which is the challenge of, really, the pressure that means in terms of requests for service. On page 2 of our report, we’ve put to you that which is based on extrapolation of the last five years or so of the actual level of requests for services. There are in excess of 2,400 children per year that we are receiving requests for. From that, you can see that we tip over 5,000 requests for services, just on the basis of that type of extrapolation, by 2030.

Now, I know your particular interests were narrower, perhaps, than that which I’m addressing, but I hope you’ll find this helpful to put it in context. The reason I’m doing so is because our experience and our focus is based on a valuing of each child with special needs in a similar and equal manner.

As we look at that and see ten times more demand than we currently have capacity for and a line that goes up not parabolically but very close to it, we’re very concerned for the future of that and what that means, given the base of funding from which we started. The assumption often made is that at a public policy level, it was all fine before. It wasn’t all fine before.

It has, for very long time, been a case of population growth. It has, for very long time, been a case of this parabolic need going up and resourcing and basic ability and capacity either staying stable or having lesser growth. We understand there are many pressures on the government of British Columbia, but we wanted to take the opportunity today to bring this to your attention.

On page 3, we’ve tried to outline for you case studies to put this in flavour and in context — so what it means for individual challenges for children. You’ll see some of the case studies that we have included in the report are composites from real children served by the Centre for Child Development.

On pages 4 and 5, we have additional systems challenges that we’ve identified for you. We have recommendations that summarize all of this, including the numbers of children served, on the back page of the report.

You’ll see there are suggestions summarized. Essentially, to cut to those, knowing that our time is limited, we’ve recommended fundamentals around proportional allocation by actual population of children and youth with special needs by region to ensure fair and equitable provincewide access to service. You’ll note that we’re not self-interested. We’re talking about the interests of children and youth with special needs themselves on an equitable basis across the province. We’d also like to see that allocation grow to more fully reflect the population and the service needs.

We’d like to see families provided with access to social workers prior to diagnosis or acceptance in our At Home program and other programs so they can help navigate. You’ll see recommendations for increasing the number of social workers and our family health advocates to help families navigate systems; additional education to also assist with early assessments and navigate our very complex health service system; and also, providing more resources for the assessment of youth so that they can access relevant services and have developmentally appropriate plans for housing, education, work and community involvement.

With that, Mr. Chair, I’ll pause my presentation for your discretion.

N. Simons (Chair): Well, thank you very much — a pretty comprehensive presentation. We’ll look through it, obviously, in more detail.

I look to my committee colleagues for questions.

R. Singh: Thank you so much, and thank you for the great work that you are doing. I’m so proud that this centre is in my riding. Thank you.

Going through your presentation, I was just looking at the challenges. You did touch on that — Surrey being such a diverse community. We know having a special needs child is challenging enough, but it is more challenging for people who have additional barriers.

[9:45 a.m.]

How difficult are you finding it for those people to seek the help? There’s a stigma attached. There are also language barriers, sociocultural barriers. How do you find that?

G. Bremault: I’ll speak to it initially and ask Dr. Katz and Karen Edwards if they would like to comment. You’ll see on page 4 of our report — and thank you for the question, Rachna — the challenges that you mention in terms of English as a second language, new immigrant and refugee status, socioeconomic barriers, additional health concerns within families, cultural barriers or sensitivities, as you allude to.

It’s our experience that there are many individuals for whom having a child with disabilities still remains a matter of cultural shame. That’s a very widespread issue across many cultures. It is not unique to any particular culture. Therefore, it is challenging for individuals to come forward and to have confidence in the services that are in our very complex systems. With new refugees and new immigrants, there may be significant distrust of our public systems that we have to overcome.

There are obviously many, many language and cultural groups in this region — at last count, I understand, well over 100; perhaps over 160. Given that complexity, the Centre for Child Development ensures that every single family receives translation services, but we do that with charitable dollars, fundraised dollars. It is not part of what we are funded to do. Of course, doing otherwise would make the services completely inaccessible. So there are significant, significant challenges in those barriers.

The others are as indicated on page 3. We have very significant challenges in terms of the wide array of health care professionals and referral systems. You’ll see a diagram there that’s about the challenges we face with general practitioners and pediatricians and school districts and other community agencies and the translation service for each of them, into our services, of their referrals and our intakes. And then, of course, the challenges parents have navigating that complex system.

If I can indulge the Chair, I’d be happy for Dr. Katz and Karen Edwards to respond.

N. Simons (Chair): Please.

B. Katz: I would just add that, as I think the committee knows, Surrey receives a significant portion of refugees and new Canadians. I would certainly reiterate all of the barriers mentioned in our report to the committee. What I would add, only, is that, as I’m sure you’ve heard, certainly many of our refugees, in particular, come to Canada with long histories of trauma, both physical and psychological. The families we are serving have an additional factor, that being a child with a disability.

Very often, those children are coming to us after ten, 12, 14 years in a refugee camp where they’ve received very little medical care and certainly not the comprehensive care that we can provide here in Canada. So there’s quite a bit of catch-up for those families in addition to all of the other barriers they are facing as new Canadians.

Additionally to that, our system in Canada is really set up to focus on early intervention, so the assumption built into the system is that you are lucky enough to be born here in British Columbia. If you have a significant issue, you may be taken to Children’s Hospital, where you get world-class care. You get to go to somewhere like the centre, where you can get intensive early intervention therapy. Then by the time you’re ten, 12, 14 years old, the intensity drops, because you are assumed to have had all of this early intervention medical and therapy care.

Obviously, for our refugee families and our new Canadians, that isn’t generally the case. So that is an additional barrier, as well, for those families, since our system is not really set up for that.

N. Simons (Chair): Thanks, Doctor.

K. Edwards: I think I would just emphasize what Gerard said about how complicated the system is and how hard it is for families that have everything together to actually navigate the system and get to the diagnosis part. We’re fortunate, I think. I’m very happy that our centre does not require diagnosis to get service. We require a need. “Is there a need for this child? Yes. You can have service here at our centre.” I think it makes things easier for families. They don’t have to actually label their child in order to get services.

N. Simons (Chair): That’s a very good point. Thank you, Karen.

Laurie, I think you have a question.

L. Throness: Just one short question. We’re looking at transitions, so I’m wondering: the transition that you’ve identified here at 17 or 18 years old — how many people are we talking about in your area who would be facing that challenge?

[9:50 a.m.]

G. Bremault: Well, at a total macro level, I’ve given you the broad statistics. I’ll ask Karen Edwards to talk about some of the challenges, particularly for our youth and teens who are transitioning. Just to be plain — I’m sure the committee is well aware of this, but just for the sake of the record — our services are not short-term services by their nature, for the most part.

The path of the children that we’re talking about, at 3,140 coming through our system, with almost 30,000 children and youth with special needs in the region…. We’re working with those children and youth essentially from the point of pickup or diagnosis, all the way through the lifespan to the point of discharge — in our case, at about 18 or 19. The path will continue on. That’s the mathematical answer. The reality of that I might let Karen speak to if that’s fine by you, sir.

K. Edwards: Transitions are really challenging, particularly the transition from youth services into adult services. If you qualify for CLBC, there are services available for you. If you don’t qualify for CLBC, there’s not much available for you. The majority of youth with special needs do not qualify for CLBC because their IQ is a little too high. They may have huge functional problems.

We have children with spastic quadriplegia. They cannot move their body, but their brains are bright. These are bright kids. There are no extra services out there, yet they have the potential to actually go out into the world and do — get a job, have a family. They have the potential to have typical lives if they had a little bit more support.

The kids — like the mom that was talking earlier — with ADHD…. They might, as an adult, still need extra help, but there’s nothing out there for them because, cognitively, they’re doing pretty good. It’s that functional ability to cope in the world. You have to look at what we can do to provide the supports to allow people not only as children and youth but as adults to function in this world.

G. Bremault: If I might add, Mr. Chair, there’s a catch-22 in this that we’re palpably aware of, which is that because we’re serving about 12 percent of those who have special needs in this region, we focus on those who have the most complex and challenging disabilities. Therefore, the catch-22 is that we’re unable to provide early intervention services to the vast majority who have more moderate or mild needs. The irony is that that might be where we would be best able to have the most significant early intervention impact.

Our challenge is, of course, that we would never leave behind those who face the most difficult challenges. So this catch-22 is one that isn’t just palpable for the Centre for Child Development. It’s palpable to all our partners. We provide the speech-language pathology referral and intake for the entire region with all our partners in public health, etc.

N. Simons (Chair): Well, you have a very big task, and I know you are going to continue doing the amazing work that you do. We’re glad that you’re here and helping us find some solutions, potentially. Thank you for your time today.

G. Bremault: Thank you very much. We look forward to your report and being of assistance as you implement your recommendations.

N. Simons (Chair): Thank you very much.

Next on our list, we have Amanda Preston. Amanda is representing the Home for Every Child Adoption Society.

Welcome to the table. I’ll give you a warning after eight minutes so that you know you have two minutes left. Thanks for coming today.

HOME FOR EVERY CHILD
ADOPTION SOCIETY

A. Preston: Thank you for having me. I don’t have a paper presentation for you, but I am just going to speak into it.

I’m the director of Home for Every Child Adoption Society. We support both adoptive families and foster families. I’m also a social worker. I’ve been in the ministry working with them, and I’m also a parent. I’ve got eight kids, all prenatally exposed, seven of them who have diagnoses, who have been through the assessment processes.

As I’m speaking today about the assessment challenges that I’ve seen — that’s kind of my experience — not only have they been through once; many of them have been through multiple times. We’ve been through multiple centres, so we’ve really seen firsthand what some of these challenges are in my own family, as well as supporting many of the adoptive and foster families out there.

The reality is that so many of the kids that have some of these challenges, particularly FASD, are kids that have come through the system, whether it be foster care or adoption. That’s just the reality of where the kids come from. The adoption and fostering community is a really huge part of this challenge.

I’d like to start by speaking about the assessment challenges. There are a few issues. I’m not sure what you’ve heard already, so I apologize if I’m repeating anything.

[9:55 a.m.]

One of the first ones would be wait times. Wait times to be seen through Sunny Hill are roughly 18 months to two years, depending on where they are. Every year that wait-list changes, but two years is roughly the amount I’ve seen every time, through all of my children. The reason wait times can be really challenging is because often people don’t even know when to start putting their kids on the wait-list.

FASD, ADHD — they’re often not present in the first three years of life. Many kids do have some symptoms in those first three years, but it doesn’t start to get really challenging until the toddler years and starting at age five. If you have a child and suddenly you’ve come alerted to the issue that they might have FASD…. If they’re five years old and you need to be put on a wait-list for two years, they’re not accessing the supports they need when they’re starting the school system.

That’s really a key. We need early intervention for kids. Getting an EA in kindergarten is going to make all the difference for these kids, because if they don’t have that support, they’re going to be falling behind socially and academically. That’s going to affect them for their whole life, because they’re going to get a negative feeling about school. They’re not going to be accepted. If people aren’t even getting onto that wait-list till age five and then have to wait two years, they’re not being serviced properly.

Many doctors also don’t even know about the FASD assessment process or even about FASD. There are many doctors that are still telling people that it’s okay to drink during pregnancy, which it’s…. No amount of alcohol is safe. We need to change the education to doctors so that they know, because the way it works is that you have to refer them to a pediatrician, and then the pediatrician refers you to Sunny Hill. There are a few steps involved, and while most pediatricians know the system, family doctors don’t. If we’re not able to get that education towards them, then there’s going to be this huge divide of people even knowing about these services.

I’ve spoken to so many families that aren’t aware of all of these assessments, aren’t aware of the process and aren’t accessing it when they need to until they get to the school system and are hearing about it from teachers and EAs and resource workers. “Oh, I think your kid might be having a challenge with this.” So the wait times are a huge issue.

The second issue is a lack of funding. I’ve spoken to the director of Sunny Hill before about their assessment process. What’s happening is they’ve said that, over the years, their funding has become less and less. I’ve seen this firsthand. That’s now resulting in them doing their assessment process and funnelling kids in a completely different way.

This two-year wait time…. What we used to do, with my son who’s 14…. We put him on the wait-list when he was three, so by the time that he was five, he was able to be seen. He had the diagnosis before kindergarten, so we were able to access services. Now you’re not able to even be on the wait-list until you hit age five, which is the required age for an assessment. What that means is that those kids aren’t being assessed till they’re roughly seven years old.

If you’re able to fandangle your way in, which I have definitely tried and gotten some of my kids in a little bit sooner, what they’re instead saying is, “Okay, well, we’ll let you come to Sunny Hill. We’ll do half of the assessment” — the pediatrician portion, where they’re looking at facial features and getting the medical background.

But they’re not doing the second half, which is the psych-ed assessment. The fact is that you need the psych-ed assessment in order to get the school funding. So even if they’re getting the kids in at five, they’re not doing the full assessment that’s required to get the supports needed. Furthermore, they’re then saying: “Because we don’t have the funding, please don’t bring your child until they’re six or seven years old.”

More and more kids are getting older before they’re actually having these assessments. Again, those kids are missing all the supports that they need when they’re first hitting the school system. As you’ve probably heard, they’re also seeing the highest-needs children first. I’ve had kids, myself, turned away from the assessment process because their needs weren’t high enough under their guidelines, whereas they’re extremely high needs compared to the average child. That’s an issue.

What I’ve actually had to do personally, and many families that I’ve known, is do private assessments, which can cost $2,000 to $3,000. There are still wait-lists for private assessments, usually six months. Most families don’t have this extra $2,000 to $3,000 to do these assessments.

Another issue that needs to be addressed is the treatment of caregivers in these assessment processes. There’s virtually no training on how to interact with foster parents, which, again, is a very large majority of families that are going through these assessments, because the stigma isn’t there, so they’re readily accessing these services.

The most recent encounter I had was where we went to an assessment for my five-year-old son. A social worker came who had just been sent that day — had never met me and had never met my son. The person doing the assessment, who was the director of it, said: “I’m sorry, but you’re just the caregiver. You’re not the guardian, so you can’t come into this meeting.”

[10:00 a.m.]

Now, as I’m sure you can imagine, I don’t know how they’re going to get information about the child and his symptoms if they don’t have the person who’s raising him in the room. The social worker did try to protest, saying: “I don’t even know this child.” They said: “No. You’re the guardian. You need to come in.”

Sure enough, two minutes went by. They came back out and got me, because they had no information. If any of you have kids, you can imagine not being allowed into a room with the child that you’ve been raising. Even if you haven’t been raising them their whole life, you’re the one who’s raising them at that time. You know them best.

If you aren’t even welcome into that assessment process, how are they able to get an adequate view of what those kids’ challenges are, how to support them and how to get a proper diagnosis? That’s a huge issue. There needs to be training around that, about respecting caregivers and seeing them as a part of the team, not just as a glorified babysitter. Right now, that’s a huge issue.

The next one — I don’t know what you guys can do about this, but I did think it was worth bringing up — is just the requirement that prenatal drinking has to be on the record to get the FASD diagnosis. The problem is that when you’re a foster parent or an adoptive parent, you often don’t have any of those records, but it’s very clear that your children are suffering from these issues. If there’s some way to get social workers trained on getting that history right when children are born…. The goal for children, of course, is always reunification when they come into foster care, but you still need to be getting that history, getting it written down.

As I’ve been in the ministry firsthand, they take an approach of wanting to respect the birth mother and not asking these questions, but it doesn’t benefit the children down the road. So getting training into the child welfare system…. Social workers need to be getting a history right when kids are born, finding out if alcohol was involved, and doing it in a way that doesn’t shame the birth mother so that they’re open and honest about it. It’s so that when they are doing these assessments down the road, we have all the information.

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, when really, they’re in such similar boats. They need the same sorts of support services. It’s a medical condition, and MSP is supposed to treat medical conditions. Why are we having kids falling through the cracks, not getting assessments and not getting services, simply because of the name of their diagnosis, whereas kids with autism are?

There are very few programs that are included and that would be covered, such as the child development centres. They have key workers. Usually most communities only have a single key worker. Often they haven’t raised children with FASD themselves. So the support there is very minimal. The majority of all adoptive and foster families I know have not had a positive experience through the key worker program. Mostly it’s just referring them to other ways of trying to find funding: “Oh, apply to this grant. Oh, go here; go there.” It’s a lot of running around and people coming to your house and just saying: “How is life?” That’s really not what we need.

We need hands-on services. Kids with FASD, in particular — but often ADHD as well — need very specific treatments. They need speech therapy. They need behavioural consultants. They need OT, chiro, counselling, therapies like art therapy, horse therapy. Many of them have incontinence issues. So many of them have to take medications. I think I spend close to $700 a month just on medication. There’s no funding for any of these services.

Our organization does provide post-adoption supports for foster and adoptive families. They can apply for a small amount, but we’re a very small charity. We don’t have any kind of grants. We just fundraise to cover these and are able to help a very few families. Where is the government support in all of these needs? How come kids with autism are able to access all of these things? So many of the therapies I just mentioned do cost over $100 per session.

If we want to get these kids to be helpful citizens in the future and not weigh down other systems, we need to get this early access intervention. Without it, kids with FASD have such high rates of ending up in the justice system. They end up homeless. They end up struggling with addiction. They end up with mental health issues, as well as ADHD. They’re viewed in such a negative light. If they just had supports and could get ways to work through this, then you’re going to actually reduce money in so many of these other areas. We need to get that early intervention. We need to get the funding. I think that’s one of the hugest issues.

[10:05 a.m.]

I can just say firsthand, as a mother who has multiple children with FASD, that there’s nothing worse than seeing your child not accepted, not liked and having no friends, simply because the government isn’t providing the funding for the programs they need to get the support they need.

N. Simons (Chair): Well, thank you very much, Amanda. We really appreciate hearing your perspective. I’ve heard some things that I haven’t yet heard on this consultation process, so I really appreciate it.

Michelle has a question for you.

M. Stilwell (Deputy Chair): Thank you, Amanda. You are very passionate and an incredible woman to take on eight children. I have one with autism, and that’s a challenge on a daily basis — the lack of sleep and the stress that goes along with it. So eight is incredible.

I’m just wondering if I’m missing…. Is there a disconnect? Maybe even somebody on the committee can help me. We’ve had every child development centre come in here and say that you do not need an assessment; they will provide service. So while these children are waiting for assessments….

You’re saying — and we’ve heard it multiple times — it’s two years, five years to get an assessment. Why are they not at the CDCs, getting the services?

A. Preston: Well, the supports that most of our kids need are in the school system. That would be an EA. Those are some of the things that we need first, and that requires the assessment.

As far as some of the other programs, most of us are funnelled through the infant development program. I don’t think we’ve been given a lot of information about the supported child development. Infant development is just zero to three. Then they do a little bit from three to five, so we are getting some services in those ages, but what we’re being told is that there are no more supports once they hit the school system.

M. Stilwell (Deputy Chair): But that’s what I’m saying. We’re saying early intervention is critical and that we need early invention. So if we have a two- or three-year-old who’s waiting for an assessment, and we’ve already been flagged, they should be at the CDCs getting the services while they’re waiting for the assessment. The assessment, then, will help them in the school-age years.

N. Simons (Chair): I would just point out that we hear that they have the ability to serve 12 percent of the population, so not everybody can be served in those infant development programs.

A. Preston: I will just say that when I say early intervention, with FASD, it really starts at around age five. That’s when we’re seeing that they need the supports the most. In the toddler years, it’s really hard to figure out what’s FASD-related and ADHD-related, versus the regular toddlers who don’t understand cause and effect. That’s just part of normal development.

Age five is when a lot of us see the struggles start to come up. We need the services then, whereas, most kids aren’t getting it until several years later.

L. Throness: I have a question about fostering. You’re saying that foster parents don’t get any special training in dealing with children with special needs. Can you tell me what kind of training they do get from MCFD?

A. Preston: They get some training on special needs. Foster parents have to go through a foster parent education course that goes over all sorts of things. Grief and loss. They touch on FASD. But FASD — and ADHD, for that matter — is such a complex issue. They’re not getting the in-depth training.

Once they do actually become foster parents, it’s then their own prerogative what other trainings they go to. Some foster parents go to a lot of trainings, get more information and know how to navigate it. But lots of them don’t.

L. Throness: But that training is available to them if they want it?

A. Preston: Yes, lots of training is available.

N. Simons (Chair): I just want to thank you for reminding me of the issue with caregiver versus guardianship. As a former social worker, I remember that being frustrating and mind-boggling at the same time. That’s an aside.

Just to mention, to put out words in support of foster parents who do a lot of really important work with kids either as they’re waiting for a permanent place or as they get prepared to go back home. I really appreciate those particular points. I just want to say thank you for being here and taking the time to let us know your views. Really helpful. Thank you.

Did Ronna-Rae have a question?

R. Leonard: I did, but you kind of wrapped up nicely.

N. Simons (Chair): Well, let’s get Ronna-Rae in with a quick question.

R. Leonard: I really appreciate hearing from you today. We heard from a foster parent yesterday, and it was really apparent that they’re not attached to the stigma of having to admit to drinking if it’s an FASD child, and recognizing that foster parents, by and large, are dealing with the special needs of a lot of kids. So hearing your story is really valuable, and knowing that there are opportunities for training for foster parents.

[10:10 a.m.]

Something new that you brought up, which I wasn’t…. My mind is on the idea of: how do we get every child assessed, and how do we do that without attaching stigma? But you’ve indicated to that range of age before symptoms appear…. I’m just wondering, in terms of challenges as a foster parent, if getting back to the birth family is the goal, what is your experience in terms of trying to address FASD and ADHD in children and then seeing them go back to the home? Is there support to the birth parents to help continue with providing the supports?

A. Preston: I mean, that differs from parent to parent. There are definitely supports for parents — the same that foster and adoptive parents would get — in terms of going through the assessment process through Sunny Hill and that sort of thing. But they have no extra funding. Birth parents aren’t going to get…. A foster parent, if they wanted to, could try really hard to get funding for a private assessment. A birth parent is certainly not going to get that. They’re not going to access any grants for OT or speech or anything like that. So I would say birth parents have significantly less access to supports.

I would also say a lot of them, just with their socioeconomic level, aren’t trained in the same way. They don’t have the same knowledge, so a lot of them, I’ve seen, don’t follow through with services and don’t like to admit that they drank during pregnancy. A lot of them, even if they had access, would choose not to get some of those supports. That’s not all of them. There are many, many parents who will, but a lot of them don’t, as well, just because of that stigma and the understanding of it. So there are some, but definitely not as much as adoptive and foster parents get.

N. Simons (Chair): Thanks, Amanda. Thanks, Ronna-Rae.

Thank you for coming.

Next we’ll call to the table, from the B.C. Teachers Federation — Glen Hansman.

Welcome, Glen. I saw you sitting there and listening to the testimony. Appreciate it. I’ll give you a two-minute warning.

B.C. TEACHERS FEDERATION

G. Hansman: I was glad I came early.

I know my time is limited here today, but I wanted to share with you a written brief that we’ve prepared. There’s another one that we’re going to submit afterwards, just as a case study, on some of the recruitment and retention challenges for teachers of the deaf and hard-of-hearing which we feel can be extrapolated to challenges around making sure there are enough speech-language pathologists and school psychologists in the education system.

A lot of our members who do those particular forms of work, once they have the chance to do the assessments and make recommendations for neurodiverse students, don’t necessarily have the time, then, to actually work with those students and make sure that those recommendations are implemented and working in partnership with classroom teachers because they’re stretched so thin where they are.

A lot of our members who do those roles, a fair number of them, are close to retirement, and there isn’t necessarily a game plan to make sure that the education system has the ability to recruit people who are either midcareer or early career to those roles. People who have the credentials to do that type of work can make a lot more in private practice, so it creates some challenges for school districts.

I’m here to speak to you today from three perspectives. One, as somebody who is on leave from a special education job in Vancouver. Technically, I’m still on leave from a grades 3 to 7 special education class in Vancouver, working predominantly with children who have written and expressive output disorders, mostly with a Q designation, but also children with either moderate to severe behavioural disorders — students who would have an R or an H designation — working in partnership with MCFD or outside service providers working with the families.

I’ve experienced firsthand, from the perspective of a teacher, the frustration that my colleagues have, and parents, in terms of the long wait-lists in order to get students assessed in the first place and the challenges to get services directly to students on a consistent basis, with or without a designation. There is lots of talk from school districts about the importance of early intervention, but the challenge is actually providing that without having a designation in place.

[10:15 a.m.]

Also, the perspective of being able to work with that subset of students in our population and knowing the disparity between services in the public system and what’s available in private institutions. I live just three blocks away from the Fraser Academy, which is an independent school that works with students like the ones that I teach. That institution, for a fee, is able to provide intensive Orton-Gillingham training every single day — small group instruction, one-on-one support, the sorts of services that should be freely available in a neighborhood school for children who need them.

There’s a lot of sympathy and empathy for parents who feel pressured to save all their money and remove their children from the public system and go into the independent school system. No one should feel that pressure. Not every family is able to afford it, nor should they have to do that in the first place.

I’m also here today presenting on my perspective as the president of the BCTF. I’ve been to 59 out the 60 school districts, and I’m going to cover off Nisga’a — it’s the remaining one — next week. So I’ve seen firsthand the disparity of supports from one school district to the next and some of the myth-telling that kind of occurs.

You’ve heard some examples today where parents get contradictory information. Can my child get supports without the designation? Well, they should be able to, but it doesn’t always happen. Why does it take so long to get my child assessed, to get a special education designation? Why is it that some students get prioritized and not others? And even then, when a designation is given, the services aren’t necessarily there or they’re not there consistently.

These are all problems that are connected with the responsibility of the Minister of Education versus the role and responsibility of school districts. There needs to be some coherence with regard to who’s in charge of what. The challenges that school districts face…. Given that most of them around the province spend twice the amount of money on special education services than what they receive from the province, school trustees and boards of education have to do this impossible task of sort of choosing where else they’re going to pull from in order to make sure that the students who are in their care get adequate support.

Then lastly, just making sure that services are consistently there. We’re having lots of challenges not just in the Lower Mainland but in more rural and remote areas of the province — making sure there are people on the ground not only to provide the specialized accommodations and services that are needed for students once a child is designated but to make sure there’s attention paid to the needs of students with or without a designation in the first place and to make sure that our members, who are just generalists in regular classrooms, have opportunities for in-service and professional development opportunities, regardless of where they live, to go deeper into the needs of some students with special needs.

The nine teacher education programs around British Columbia do require that all people graduating have taken some coursework at the university level around inclusion of students with special needs, but what that looks like is quite different from program to program. And no one course or a couple of courses at the teacher education programs can possibly prepare somebody for the actual needs in a classroom, which may be completely different from one year to the next or from one community to the next.

The question, then, we’re left with is: what is the responsibility of school districts, as employers, to make sure that all teachers, throughout their career, can be supported to gain additional coursework, additional professional development opportunities, that are relevant to the students that are actually in their classroom so that we’re not having students fall through the cracks, so that the teachers themselves don’t panic and take out their frustrations on students, as we heard on the tape that was played earlier, and so that all students who have a disability can participate fully in the education system in a regular classroom as much as possible, with dignity, be valued and have the supports and services that meet their educational needs?

We still will continue to have some students — I’ve worked with some of them — who are severely intellectually disabled or have physical challenges. I’ve worked with students that have to be fed and toileted in a regular school setting. They’re there.

[10:20 a.m.]

If the adults with whom they’re working aren’t there consistently or if we’re continuing to have turnover in school districts or just difficulty having enough people to replace either education assistants or teachers when they’re absent, that could be very hard on those students. Other behaviours sort of come up because that consistency isn’t there.

That’s why you’ll continue to hear us and BCEdAccess and Inclusion B.C. raise concerns around children being excluded because of failures to fill or because of staffing issues, concerns that children would be sent home because they’re “disruptive,” as opposed to what the adults in the school system can do to make sure that there’s a plan B that doesn’t involve calling upon parents to leave employment and come pick up their child yet again.

The document that we have here for you breaks down our recommendations under the three themes. One, make sure that students who need to be identified get those identifications a.s.a.p., regardless of their age. Second, make sure that there are services for them — and the needed supports, consistently, once they have those designations. Thirdly, make sure that all school districts have the necessary amounts of money so that they’re not having to pull from elsewhere.

We’ve provided some stats in terms of the percentage of school districts that spend double the amount of money on special education services than what they get from the province. But we shouldn’t have to keep seeing Human Rights Tribunal complaints like the Moore family versus the North Vancouver school district play themselves out. No family should have to take their school district to court. Those accommodations should be available when and where needed for their students in the schools.

I’ll leave this with you. I’ll follow up afterwards with that separate document on deaf and hard of hearing, because making sure that the qualified people are available across all 60 school districts continues to be challenge.

N. Simons (Chair): That’s a good point: that some of the professions within the school system have other kids that they look after without the neurodiverse label, for lack of a better term. Thank you very much, Glen. I really appreciate your coming today.

R. Singh: Thank you so much, Glen. I know your association keeps on advocating for children with special needs. You touched on that — about the teachers and the challenges that they’re facing. We have heard from a number of parents that feel that challenge once the child transitions into kindergarten, to the school system — the challenges that the parents are facing. We know that teachers are facing the challenges too, especially now when they are hiring so many new teachers. You touched on that. They do get some training but not enough. What needs to be done?

G. Hansman: There are some school districts, like Surrey, that take this on pretty good compared to the norm around the province. I’m a good example, where I trained as a secondary teacher in Quebec. When I came to Vancouver, I ended up in a grade 2 class. Fortunately, there was a principal and a vice-principal that took me under their wing and taught me everything they knew around how to teach primary, how to work with students with special needs — an amazing set of primary teachers.

At the time, the school district had district supports available where there were BCTF staff or people in district principal positions that could go out and work with teachers and do training and mentoring, relative to the actual needs of that classroom, so that the students didn’t fall through the cracks and the teacher could survive and thrive over a period of years. A lot of those services and opportunities disappeared for many years and are starting to be rebuilt.

The larger the school district, the more opportunities there are like that. But I’ve been in Peace River North and in communities like Tumbler Ridge. Obviously, there are economies of scale. You can’t do the exact same sorts of things, but you could do MOOCs. You can do tech-based things even within the school district as long as there are face-to-face opportunities. That is much needed. We do have a very sizeable proportion of our membership that has gone on to do diplomas or graduate degrees in special education as well, but those are people paying themselves.

We need to sort of open up a conversation — like: “How do we do this in the health sector?” Provide the current workforce the opportunities to gain additional training and consider doing the same things within the education sector. It’ll involve spending more money, but it’s worth it. We have people who are keen to do it. We just have to support them with the time to do that. Ultimately, the experience of students in the school has to be better, because we want all kids to be able to graduate and go on to other post-secondary or a career that they’re interested in when they transition from high school to life afterward.

L. Throness: Thank you, Mr. Hansman, for your presentation today and for your service to students, parents and teachers.

[10:25 a.m.]

We’ve heard throughout our travels here that once a student is assessed in the school system, they get money for that child from the provincial government, but that money does not necessarily follow that child. Instead, it gets put into a pot in the school district or in that school. Could you speak to that issue? Some parents have complained to us about that, and I think it was alluded to this morning as well.

G. Hansman: Thanks for the question. That’s a fair observation from the parents that have raised it.

It’s going to depend on the school district. That’s sort of what I referred to earlier — the interplay between what the province does and its responsibility to make sure that there’s enough money there. But then there’s the decision-making of the 60 individual school districts when they allocate their budgets. That concern also plays itself out with French immersion funding, which comes from the federal government, as well as funding for Indigenous students in our system, from the provincial government.

Once it gets to the school district level, there are no controls over how much of it is actually spent directly on that child. The position of our organization is that each and every dollar should be spent as close to the child and the services they need, inasmuch as possible.

L. Throness: Do you think that should be mandated by the province?

G. Hansman: We would recommend that there needs to be more oversight from the ministry to make sure. There will be some unique decisions that some school boards will make, especially when it comes to providing some of those special professional supports that I mentioned, or even just procuring technology and physical supports that some students must need. Even then, they should be able to account for the dollars they receive that are special education dollars and make sure that 100 percent of those dollars are actually spent on the students that are designated, in one form or another.

N. Simons (Chair): Thank you, Laurie. Thank you, Glen.

We have time for another question, if you want.

I was just going to comment. We’ve heard a few times about the children being sent home from school and coming to school maybe one hour a day or two hours a day. Is there any statistical detail available for us to see if there’s a trend — if there’s an increasing trend, if it’s flat, if there are school districts that have more, or if it’s related to their funding, etc.?

G. Hansman: Not collected by the province. The province of Nova Scotia right now has decided that it is going to be collecting that information as an entire provincial jurisdiction. Right now we have a few individual school districts that have elected to do that — North Vancouver being a good example — and we’re glad that they’re doing that. Other than that, BCCPAC has done a survey. BCEdAccess has an ongoing one. Some of it is anecdotal, but it paints a picture around the province of where this is an all-too-common occurrence.

I think it’d be fair to say that we wouldn’t send home the entire grade 4 class if there was a teacher shortage or if a school district was unable to get an EA that day. So why is it that students with special needs and their families are expected to shoulder a staffing problem that is ultimately the school district’s? From the perspective of some families where this is happening constantly, it’s a big problem.

Then that’s also coupled with the fact that failures to fill, as we call them, also play out in another way, where the special education teacher or ELL teacher is pulled from their regular assignment, and then they’re temporarily reassigned, say, into a grade 4 class. So the students that should be working with that teacher that day lose out on the accommodations they’re legally entitled to.

We’ve been calling upon the Ministry of Education to do similarly to the Nova Scotia government, so that we could at least get some data and know where the problems are. I mean, if this is only an issue in nine school districts, then let’s find a solution for those nine school districts rather than making a decree everywhere. But in the meantime, students are missing out on supports they should be getting, and families are missing out on employment or are having their lives disrupted in another way.

N. Simons (Chair): So you’d suggest that it would be valuable to know with a little more detail?

G. Hansman: Yep. It would be easy to track. It just needs to be done.

N. Simons (Chair): Well, I really appreciate your time and everything you do for the kids in the school system and for the teachers in the school system. It’s appreciated by us. We’re undertaking this review knowing that we weren’t looking at something that was working perfectly. I’m glad that we’re having an opportunity to learn where we can improve, recommendations towards improvement.

G. Hansman: Thank you to all of you for paying attention to these issues. It’s very important.

N. Simons (Chair): Thanks, Glen.

Let’s take a five-minute recess.

The committee recessed from 10:29 a.m. to 10:40 a.m.

[N. Simons in the chair.]

N. Simons (Chair): Thank you, Members. Thank you, guests. Thank you, everyone. We’re just going to resume the committee meeting. I thank everybody for their patience. We are now going to hear from Leona Kampman.

Welcome to the table. We look forward to hearing what you have to say. I’ll give you a little warning when you have two minutes left. Thanks a lot. I won’t be rude.

LEONA KAMPMAN

L. Kampman: Okay. Well, I don’t have anything prepared, because I came here without an appointment, but I guess you’ve had a cancellation. I came just to observe and watch what other parents and other professionals in our province are saying. Then I was going to maybe submit a written one. But I’ll just go by what I’ve written down.

Our family has three individuals with FASD. My son was adopted when he was 11 months old, through the ministry. Our other two girls — they’re a babies-on-the-doorstep kind of story, where their birth parents came to us. Then we went through family law, family court, and we have guardianship of them.

I can only speak to FASD. One of my recommendations with FASD is that an individual who is diagnosed with FASD gets the exact same type of support and funding, regardless of their living situation, if they’re adopted, if they are with a birth family, if they’re with a foster family. It should all just be equal opportunities, because I see that with my son. He gets very limited funding through post-adoption funding. My girls get zero.

We’re very thankful to organizations in B.C. such as Variety. The government should be sending thank-you cards to Variety, because they’re stepping up and doing grants for children with FASD, for what they need. Now, it’s limited, because they can only have so much. Actually, I guess we should be thankful to the people of B.C. that donate to Variety.

Our challenges are…. I find that society as a whole isn’t aware of FASD. The individuals look typical. It’s a very invisible disability. So the expectations we place on our children — they’re not capable of doing it. That’s where the meltdowns happen. That’s where the frustrations happen.

In the school system, if they’re not trained in or understand FASD, they have different expectations of children, like my children. For instance, for transitioning into the middle school and going into high school, there are different expectations. There are expectations of our children to become more independent.

I was fortunate enough as an adoptive parent to have parents that were foster parents. I was able to see children with FASD when they were younger, not as they were older. But what I’ve learned over the years is that you want to parent children…. There’s a societal parent handbook of how you train your children. I had to throw that out, because parenting a child with FASD looks like, to other parents, you’re just giving in to them. I found that I had to throw out the handbook. I found that if I could raise my children in a fishbowl, it would be easier. But it doesn’t give them opportunities. It doesn’t give our society opportunities to learn.

[10:45 a.m.]

I find a lot of people don’t look forward to summer holidays. We do, because they’re not put into the system to struggle. What I found in middle school and high school is I would be advocating for my children. I love our school. I love all the staff. But I would get comments, such as: “Well, all kids are like that. My kids are like that.” “You need to let go” — like I’m a helicopter parent. “They need to learn independence.”

What I’ve been trained on and what I understand about FASD now is that these individuals need to learn and to embrace interdependence, and that’s what’s going to make them successful. But when you have a system working against you, telling your child one thing, then there’s going to be resistance.

Fortunately, I have children that aren’t difficult, bucking against the system, right now. But I’ve heard from other parents where they’ve had, from different school districts, a principal, basically, in front of the child, saying to the child: “Well, you’re almost this age now. You can make your own decisions.” And yes, as a society, we give that to our individuals, but it’s kind of working against the people that are actually trying to benefit the individual.

I don’t know if that makes sense.

N. Simons (Chair): It does make sense, yeah.

L. Kampman: What I also hear is that when they hear FASD, there are certain stigmas attached to that diagnosis, such as: “They don’t understand consequences. Therefore, they’re not going to be productive members in our society.” People automatically just go to that, where, raising my children, I see the skills they have.

My daughter, who’s in grade 11, wants to go to UBC. She wants to go into forestry. She’s amazing academically. She’s very well loved. She’s socially accepted, except probably in the last couple of years, because there’s such a dysmaturity with people with FASD. The gaps. You can start to see the difference. Her organization is not there, but they don’t see that a lot. Well, they do see it in school, but not as much, because she has us in the background helping her do it.

She wants to go to UBC, and I know, academically, she could do it. My concern is that when she leaves the school system, she may not get proper support because she may not qualify for CLBC, even though she needs to have that support to be successful.

What I know about FASD is that there’s a dysmaturity. What our expectations of a 17 year old…. It may be that our child is a 12-year-old at that time. What I’d like to see is our government and our systems put in place, for individuals with FASD, the same supports we would put in place for children in foster care and that you extend those services to 24, 26 or whatever it is.

I’m not sure what the stigma will be with my daughter when she goes to UBC. Yeah, I’m not sure.

N. Simons (Chair): You’ll worry about it, anyway.

L. Kampman: Exactly.

I heard another parent referring to ADHD support. She also has ADHD. In our school systems, maybe we can teach our children how to…. If they have these diagnoses, have classes that are specific to teaching them those organization skills.

I’ll probably be doing some writing submissions to you as well.

N. Simons (Chair): That would be great, and you know what? To me, I find this a really good opportunity, if you’re okay with questions. You have a perspective that our committee doesn’t necessarily have a chance to delve into too much.

[10:50 a.m.]

Can you tell me, if you could, for our committee members…? If a child with fetal alcohol spectrum disorder, as they call it, wanted adults to know how to understand them, what would the child want us to know, as adults? For a child with fetal alcohol, when they have some self-awareness of their different learning or different understanding, what do you think their frustration is? What should their message be to adults that are working with them?

L. Kampman: Acceptance. Knowing that they are capable of being part of our society, but they just don’t fit into the mould of neurotypical individuals.

N. Simons (Chair): In my experience, one of the very difficult things is the frustration that…. There’s an expectation of being able to learn after one example and then people getting frustrated and that sort of starting a cycle of negative self-image and such. So I’m just thinking — what you see your kids going through in that respect.

L. Kampman: Well, my oldest son also has selective mutism. I wish I had his presentation. He did an exit interview at school.

N. Simons (Chair): Send it to us.

L. Kampman: Yeah. He was brutally honest.

Another thing with my son was when he was in grade 9…. Unfortunately, I had cancer earlier in his life, so I was told: “Let the school system support him. You just take care of yourself.” So I didn’t have my hands in his education for a while. Come grade 8, grade 9 — I can’t remember the year — I was asked: “Well, we should look at putting him into a modified program or adapted program.” I don’t have a problem with putting my children in where they need to be, but I said: “Well, what does that look like?” And I was told: “Well, that doesn’t look like anything at that particular school.” I said: “Well, that’s not the question I was asking. I asked: what does that program look like?”

That program looks like teaching him how to cook, sweep the floors, and I was like: “Oh, okay.” So I went back to my son at the time. He was told by his doctor that he didn’t need to do homework because just being in school for a full day was really hard on him, so don’t worry about making him do homework. But what they weren’t seeing…. I mean, to be fair to the teachers as well, they weren’t able to draw out his stuff too, because they don’t have the training for it. It’s such an unusual diagnosis, selective mutism, as well.

Anyway, the long story is that I know that my child is smart. So I said to him: “You know, this is what the school is saying. Would you like to go into a program that does this?” He looked at me and said: “So they want me to learn how to be a housewife?” I’m like: “Well, what we need to do,” and that was on our own cost as well, “is I think you’re just going to need to do homework at home to show them what you can do.” So we hired a tutor, who he now has, and then his next chemistry test he actually got an A on. He’s brilliant in writing.

At the time, though, they wanted to put him on an Evergreen program, and as a parent, I said: “No. He can academically do it.” I think that’s a concern of mine, that some of these children are being pushed to go in an Evergreen program, whereas if they just got the right supports and they got to learn the way that they learn….

So to answer your question, what they would want to know is that they can learn. They just need to have different ways of learning. I don’t know if that answers your question.

N. Simons (Chair): That definitely does. It’s really helpful. Thank you very much.

L. Kampman: Okay. Then another thing, to the school…. Now he’s turned 18. Transitioning over, there are no supports for 18-year-olds with FASD. We’re going to CLBC, but it’s like the slow boat to China. It’s not happening — just getting answers back. What would be really nice to have had is…. I understand there’s a STADD program that’s provided, with a navigator. He can’t access that, because you have to have eligibility to CLBC first. So I’m just trying, grasping here and there and everywhere, trying to figure out what we can do with him.

[10:55 a.m.]

What I’ve heard from other parents is that different school districts have different support systems and different ways of…. So if he lived in a different school district, he might have more opportunities. You’re in the Surrey district. There is something in the school district where they redistribute funds. Our school district doesn’t do that.

N. Simons (Chair): I really want to thank you for taking the time to speak. We learned from you. I think it’s also good for people to see the strength that you have with what you do and that it’s part of our…. We’re all part of the community, and we all have a role to play. So just thank you very much.

L. Kampman: I’m all about: “You know what? Let’s learn together, and let’s grow together. Let’s not look for fault or blame.”

N. Simons (Chair): That came through with your presentation to us.

Ronna-Rae wants to…. Okay, short question.

R. Leonard: Very short. Do you work, or do you work with your kids at home?

L. Kampman: I’m fortunate enough that I can work with my kids at home.

R. Leonard: I’m sure that that makes them all the more successful, because there’s that much more support.

L. Kampman: I don’t know how parents do it that have to work.

N. Simons (Chair): Leona, just a last thing. When you said your son did an exit thing, if he’d like to submit it, we would be pleased to see it.

L. Kampman: Okay. He also did a report on FASD. All my children are aware of their diagnoses.

N. Simons (Chair): That’s an interesting point to make too. I was wondering about that. That’s very interesting.

L. Kampman: Hopefully, though…. Because we don’t want them to have stigma anymore.

N. Simons (Chair): Exactly, exactly.

L. Kampman: Another thing I was going to just say — I don’t know — is that with FASD, they get their disability from alcohol. As a society, we sell alcohol knowing that there’s potential damage. When somebody’s in a car accident — the vehicle is the damage to their brain sometimes — they get compensated for that. I don’t know if we could look at our alcohol company and say to our consumers that there has to be a special tax for people with FASD, because there is a damage there.

N. Simons (Chair): I know. I appreciate you putting that in as well. It’s all going to be part of our deliberations, so thank you very much, Leona.

L. Kampman: Thank you.

N. Simons (Chair): Next on our witness list is Adrienne Montani from First Call: B.C. Child and Youth Advocacy Coalition.

It’s nice to see you. Thank you for coming to our committee, offering your perspective and insight. You will have ten minutes, and I’ll give you a two-minute warning, very subtly.

FIRST CALL: CHILD AND YOUTH
ADVOCACY COALITION

A. Montani: Thank you for the opportunity to be here today. I’m wanting to acknowledge that we’re on First Nations territory, and I appreciate that.

First Call — we’re a coalition of 100-and-some-odd groups. I’m speaking from what I’ve heard over the years on this topic. I’m not a clinician, so I’m speaking, hopefully accurately, on behalf of our coalition members. Many are service organizations, and some of them direct their services to neurodiverse special needs children and family supports.

We also have an early childhood development round table that meets regularly, so I polled them on, “What do you want me to say?” and that kind of thing. I’ve been listening. I’ve also read all the transcript stuff, so I’m familiar with what you’ve heard. Also, people call First Call looking for support. We’re not a direct service agency, but we get a lot of stories, when people just think…. We’re the referral agency sometimes.

We also start, at First Call, from a place of knowing the evidence about the importance of early brain development, as I’m sure you all know as well, and the importance, therefore, of early intervention, because that’s when you’ve got a real window of opportunity. We know it’s more that early intervention and prevention, also, are more humane and cost-effective than waiting for families and children to be in crisis, so we come from that perspective on the importance of prevention.

You’ve asked questions in what you’ve put out around identification and referral. What we’ve seen over the years is that children in those early years can be quite invisible. There’s no universal touchstone place for them to be, because we lack universal systems that work well for zero to five. Children can arrive at school without having been touched by a system if their parents have not been able to make that connection.

We lack a universal system of care and support for families and for children that would help. I’m thinking of child care, for instance, that is non-stigma — anybody can go — or family drop-in centres, those kinds of things, where families can be seen, their children can be seen and, perhaps, early identification can happen in an informal way that then gets them on the pathway to: “Oh, you perhaps want to go over here and talk to these people.”

[11:00 a.m.]

We’ve even lost universal home visits by public health nurses for new babies. That went the way of the dodo a number of years back when we started the nurse-family partnership. You had to be in the pilot to get the visit. You can ask for one, but you have to know to ask. So you get a phone call. I’m old enough to remember that, when I had my kids, those were a really valuable couple of visits from a nurse. It just eased my…. You know, “How’s breastfeeding going; how’s weight going” — all of that. We’ve lost that as well. That’s how children can become quite invisible, I think, at this point.

We have fragmented and very underfunded services in the early years. I guess what I’m saying is that we need universal public entitlements. This comes out of the human early learning partnership out at UBC. We need universal programs that all families know about. I’ve heard, and in looking through your transcripts, that a lot of families don’t know where to go. If everybody said, “Here are the entitlements you have. Here are places you can go in your community” — they have to exist, and you have to know about them — “regardless of income level….” Even our recreation programs for little kids are barriered by: “Well, can you pay for karate class or junior soccer?” You have to pay; we have barriers there.

That means that we need adequately funded public services, like quality child care, like drop-in programs for families, and then that next step targeted on top of that for children who have extra challenges and needs. Those would be things like CDCs, the child development centres; IDP programs; supported child development; accessible assessments. I would say we need to go to — again, this is a theme I think you’ve heard quite a bit of — functional assessments at first, so that they can begin getting the therapeutic supports they need while they get further assessments and diagnoses, since that’s such a long process for many. That’s what we think we should be aiming for: that universal system within the layered-on, targeted supports as the identification for them comes up.

I want to talk about inequity. You’ve heard a huge amount about that. I’m going to just reinforce what you’ve been told, in many stories, by families and service providers. I think almost everybody who has appeared before this committee has talked about the topic of inequity — that we have an incredibly inequitable system at present for families and children with neurodiverse special needs. It’s complicated; it’s gated. You have to have this diagnosis or that.

It’s hugely barriered by income — there’s just so much difference for those who have the advantage of education, car, money, time, etc. — and inadequate public provision. We ask parents to seek help when they’re the most overwhelmed and don’t even know where to start. I’ve registered the stories you’ve heard, so I know you’ve heard all this.

Then, as the previous speaker was mentioning, and we’ve heard, again: stigma, judgment, ignorance on the part of both medical practitioners and teachers. People don’t know enough about some of the conditions, so they’re making judgments about parents — about why they ask for help, about why they didn’t ask for help. The impacts of trauma is another theme that enters into inequity, because it will affect — well, across the income spectrum — a lot of families in poverty. That doesn’t get layered into the assessment, sometimes, I think.

Transportation barriers, even in the Lower Mainland. People coming to our early childhood round table the other day talked about trying to get from Katzie First Nation or Kwikwetlem to Sunny Hill. If you’re in the north that sounds like nothing, because it’s only an hour or so, right? But you’ve got two kids; you’ve got no vehicle. So it’s a bus trip — an all-day bus trip with your neurodiverse child. By the time you’re there, you’re so stressed. What does the assessment look like at that point? Even what look like shorter distances in something like the Lower Mainland…. They were saying: “Where’s the outreach? Where’s the home visit? Where’s somebody to come and assess?” It’s because these children are not going to get there.

Groups overrepresented in poverty stats, newcomers and Indigenous families affected by ill health face huge disadvantages in the current system to get information, to get through some of those barriers I was just talking about. Inequities are built into the way assessment and diagnosis require you to gain access to funding. We have this system of: “I need this diagnosis so that I can get this money.” One diagnosis gives you this money; other diagnoses don’t. We’ve got this two-tiered, private-public…. It’s incredibly inequitable, and then we’ve got kids waiting for years for an assessment or for public access because it’s underfunded on that side.

We have the public-private, tiered system set up, and then people waiting years and missing out, sometimes completely — arriving at school having had no speech therapy or whatever. Again, you’ve heard all of this. I just wanted to emphasize how inequitable that is, particularly for some families. The least advantaged are the least likely to get the help they need in a timely way.

[11:05 a.m.]

The autism diagnosis trigger for money, and the way that’s set up — I mean, I know those parents advocated for services. That’s great, but other diagnoses don’t trigger money like that. It’s an incredible inequity. It’s unfair. It’s divisive in the community. You have parents: “I get this, but….” For instance, I was reading the Representative for Children and Youth. In the 2018-19 MCFD children and youth with special needs budget, autism got $82 million, FASD got less than $6 million. You know, the numbers may be different in terms of need, but still there’s this tiered…. What if you have Down syndrome? What if you have pervasive developmental delay, etc.? You don’t get any of the same money.

Individualized funding — I’m old enough to remember when that came in and, with that, the autism funding. It has really warped the service delivery system. It’s not only burdensome for parents, many of whom are even advantaged. It’s still burdensome for them to be their own case managers and have to go out and find people to be service providers, hire them on individual contracts, etc.

We’ve created this private market — I watched it grow — of therapists, who can charge, often, whatever they want, while the underfunded public system, the child development centres and other public health systems have trouble recruiting and retaining therapists because they can go out here and make more money. We’ve warped this system into a…. It’s all public money, but we’ve said: “We’re going to do it this way.” It’s really inequitable, and it needs to change.

It’s similar, when you look at it, to the public school system, where, if we underfund public schools and the ability to be inclusive places, well, then parents who have advantage will say: “As much as I love public schools, I’m going to put my kid in a private school.” That’s happening too, because they can afford it.

Individualized funding is not based on needs. It’s based on a diagnosis. I think you’ve heard that. Again, functional assessments would be helpful. Universal access — I think we need to ask ourselves: how can a child have a wrong diagnosis that excludes them from support? In reading some of the stories, it’s like, “Well, I had my child tested. He had this and this and this,” and it was the wrong diagnosis. So they got nothing, or they got this little bit. How can that be? What kind of a system have we created where we say, “Oh, you got the wrong diagnosis, sorry,” despite the evident need for support.

We need to focus on removing those barriers, not protecting siloed budgets. That’s a bureaucratic failing we do: “I’m sorry. We can’t help you because our budget’s this, or it’s not our business.” Then we leave children without therapies and the families without the support they need because there’s a bureaucratic eligibility justification at hand: “Sorry, it’s not our program.” That’s not okay. I’ve mentioned the travel things. Other issues — the drop in school-aged services and transitions into the adult system, the loss of services at that point. Again, you’ve heard lots of that.

I’ll just stop there, but it’s the inequity that I think we really need to address.

N. Simons (Chair): That came through really clearly, Adrienne. I really appreciate your taking the time to talk to us about this. I’m looking to my colleagues for questions.

L. Throness: Thank you for your presentation today and for your commitment to children and families. I wanted to say that we’ve heard many of the themes that you’ve touched on today over the past month or so. You’re underscoring a lot of what we’ve heard. Your critique is very broad, and we, as a committee, are required to make some very specific recommendations. If you were to look at the one or two specific things that you would like the government to do, what would those specific things be?

A. Montani: Continue to…. I’m very pleased with the investments in child care. Build that. Build that public system, because that’s a place where kids will get noticed and families will find support before it becomes stigmatized or before it becomes…. Make children visible by offering that. Not every child’s going to go to full-time child care or anything, but build a system that they can access, whether it’s preschool, whether it’s part-time, whether it’s full-time — non-barriered.

L. Throness: The child care system is not, per se, dealing with special needs children. It’s dealing with all children.

A. Montani: But that’s how they get…. When you go into child care, in a quality…. Your early childhood educator is going to say: “Gee, your child might have some needs. Let me connect you to this program.” There is supported child development as well. So it’s an entry. It’s one of the places we can see children.

Fund the CDCs better so that they can offer public services, and give them long-term contracts. Index them. I think you heard this from B.C. Association for Child Development and Intervention.

N. Simons (Chair): Is there a direct correlation, or reverse, between individualized funding and the reduction in funding to CDCs and such?

A. Montani: I believe so. Certainly in their recruitment problems in recruiting therapists because now there’s this market. Yeah, I watched the whole…. I mean, we used to have students come through our office, and they’d be a social work student. Suddenly, their career became ABA, because that’s where they could get money.

[11:10 a.m.]

Everybody in social work, early childhood educators, a lot of people saw this, especially if you live in a small community. People are going on Facebook and saying, “I need somebody,” right? It’s an easy way for people to…. Then maybe they get certified. Maybe they know what they’re doing. But it really warped the market, totally.

N. Simons (Chair): That’s the word I remember — warped.

A. Montani: I mean, it shouldn’t be a market. It warped the service delivery system.

N. Simons (Chair): Rachna, you have a question.

R. Singh: Thank you so much, and thank you for the passion.

You have talked about the barriers, and we have heard about that too — the barriers for the people who don’t have a voice. We have heard from so many advocates, especially parent advocates, who are vocal, who have the ability to advocate on behalf of their kids, socioeconomically better.

You have talked about the population that is very, very vulnerable, very marginalized. What do we need to do to get help for those people?

A. Montani: Again, look at removing the barriers to outreach. Have outreach programs. Have more local services, more supports for families in their communities. And outreach. We do need to do outreach.

If it’s in a different language…. There are mobile services for remote and rural and all that kind of stuff, but we really need to get out and talk and see families before they hit the school system and then offer them services. Not just say: “Oh, I notice you have some problems.” We need to be able to say: “Oh, and here’s where you can get some non-barriered support.”

The inequity. You have to have money to get an assessment, and that gets you…. It’s just, I think, criminal. I think it’s just not okay to say: “Oh, you don’t have the money? Sorry, your kid’s going to have a lifelong deficit because of that.”

N. Simons (Chair): Ronna-Rae wants to ask a question.

R. Leonard: Thanks very much for your presentation.

Now, you talked about the individualization of the funding. My sense has been, and I don’t know this for a fact, that it was a way of empowering families to specifically deal with the specific challenges of their own child. If that is warping the system, what is the solution? Where do we empower families but at the same time make sure we have a good system?

A. Montani: Don’t make them the case manager and the hirers. Embrace them in…. If you go to a child development centre or a public health service, or if it’s child and youth special needs through the ministry, make sure that parents are respected and part of the team and that they’re not judged. There is some practice change there. If that was a barrier — and we hear it still is — make sure that we do some education with the service providers to include families and respect their knowledge.

We have just one example in the speaker right before me of amazing parents who know their children. Make sure they’re part of the planning and the team. Don’t exclude them.

Parents with kids at the other end of the spectrum, with addictions and stuff or dual diagnosis, have had to fight in this province tooth and nail to even be allowed in, because: “Well, we’re just talking to the youth. You don’t talk to the parent.” We need to get past that and recognize that parents have their children’s best interests at heart and welcome them into the conversation. Things will come out better.

N. Simons (Chair): Thank you so much, Adrienne. It’s really nice to see you and to hear your input on this. Perhaps we’ll hear you at the Finance Committee.

A. Montani: I will do a full submission. Sorry I didn’t get to that.

Yes, you’ll hear from us at the Finance Committee.

N. Simons (Chair): Next on our list is Jennifer Barkman.

Jennifer, welcome to the committee and welcome to the table. Our system is that you’ll have ten minutes, and then I’ll give you a two-minute warning. If you notice the two-minute warning, you win…. You don’t win anything.

You have ten minutes, and you can begin when you’re ready.

JENNIFER BARKMAN

J. Barkman: Good morning. Thank you for this opportunity to share with you.

My name is Jennifer Barkman. I’m the mother of the children pictured before you there — Jonathan, age nine; Matthew, age eight; David, age four; and Isaac, 11 months. All four of our precious children are neurodiverse.

This, however, isn’t a story of tragedy or of disappointment. Rather, it’s our story of the grace of God and the joy as our hearts and our minds and our lives have been changed, even in the face of challenges, as these children have come into our family.

To begin, though, just by introducing myself and my children would be rather shortsighted. This story begins more than 30 years ago with a police officer and his wife who were looking for a preschool in which to enroll their daughter.

[11:15 a.m.]

Because of this police officer’s experience in policing and being really uncomfortable in dealing with the many people he came across every day — often his repeat offenders, who we would now know as being neurodiverse — he and his wife looked for a preschool that would help their children interact well with people who are neurodiverse, with kindness, with compassion and with intelligence.

Fortunately, they found such a school that would provide this instruction and experience, not knowing that it would go on to shape the lives of not only their oldest but their other daughter as well. Both would become peer tutors, respite workers, behavioural interventionists and, eventually, special educators and adoptive parents who specifically sought to parent neurodiverse children.

Shaped and informed by these experiences as special educators, that oldest daughter — who is myself — and my husband began the process of adopting kids with neurodiversity over a decade ago. As educators, my husband and I felt confident about raising children with exceptionalities.

When Jonathan, our oldest, was born with confirmed prenatal poly drug exposure and suspected alcohol exposure, HIV and hep C exposure, we felt confident and assured. We were able to self-refer to the infant development program, where we received superior supports in speech, OT/PT and all across the board. We had an incredible pediatrician, as well, who actually attended Jonathan’s birth.

However, once we transitioned into school-age services, obstacles became apparent. Kids are not traditionally assessed until grade 2. Without parental admission of prenatal alcohol consumption, no diagnosis of FASD will be given. Heroin? “Oh, that’s good. Heroin isn’t harmful because it’s natural. It’s not synthetic. It doesn’t really do any damage. Prenatal drug exposure has no long-term effect on children.” These are all things I have been told in seeking assessment for my children. They were excuses to deny referrals.

All of these are prevailing ideas that I have fought against with research, persuasion and, as shameful as it is to admit, sometimes pity. All of these obstacles, if they were not ridiculous enough…. Then the challenges came when it was time for formal assessments.

At the consolidation meeting for Jonathan’s FASD assessment, which didn’t happen until he was in grade 2, we were told that he wouldn’t receive a full FASD diagnosis because we had no parental confirmation of prenatal alcohol consumption. One can imagine how difficult such a thing might be to obtain from a birth parent who we don’t know how to locate, who has issues with substance dependence, transience and incarceration and who, herself, was a victim of a failed adoption at age eight and spent her remaining days in the foster care system. This lack of a correct and full diagnosis, therefore, impacts Jonathan’s ability to receive appropriate services.

We move on, then, to David, who is Jonathan’s half-brother. He experienced the same issues with substance and health exposures, but he received an assessment at Sunny Hill at age four because, through an amazing set of circumstances, we do have a parental confirmation of alcohol exposure. However, when it came time for our consolidation meeting for David’s assessment, we were told that David’s behaviour was too severe to complete any part of the assessment. Therefore, we did not get a diagnosis. I realize it’s an oversimplification of the matter, but, essentially, he’s too disabled to complete the assessment to prove that he’s disabled.

To add insult to injury, without that designation, we do not get any funding for him to enter kindergarten for special ed. I understand that there should be allowances made in the public system for equitable access to education, but let’s be honest: in order to provide him with the support that he would need, one would have to rob Peter to pay Paul. Somebody is going to lose out in that transaction. As a result, David will not attend a brick-and-mortar school next year and will, rather, be home-educated through a DL school.

However, our assessment experience didn’t have to be like this. By implementing best practices in assessment, David could have been correctly, accurately assessed and diagnosed in B.C. After my experience here, I took David out of province and had him seen at a different hospital that implements best practices in current research in how to be assessed.

David completed all of the assessment successfully. He even remained still for a ten-minute MRI because of how he was prepared, practiced and explained. It’s not because the assessments in this other location were different. It is because the pedagogy that drives how the assessment is delivered is different — based on best practices and based on current research — that he was able to be successful.

[11:20 a.m.]

As an aside, I could also speak to the gaps and barriers with assessment and diagnosis for our other two sons, Matthew and Isaac, who you see before you. But because of their very rare genetic deletion, I would probably spend my ten minutes just explaining what the issue was with them. So I’ve focused it more on the other two boys.

Without proper assessment, and the diagnosis that assessment brings, it’s impossible to receive services as these children grow and develop into young adults, as we’ve heard from others. Although these are somewhat federal issues, a lack of diagnosis on a provincial level denies David access to things like the disability tax credit and RDSPs, which allow us to plan and prepare for his inevitable dependent future. While Jonathan receives support in school now through a chronic health designation, when he becomes an adult, because he doesn’t have a full FASD diagnosis, the doors to things like CLBC are closed to him.

The lack of support for children like this is precisely what led to the conditions of the birth of Jonathan and David in the first place. This is becoming a generational and cyclical issue of undiagnosed or misdiagnosed neurodiversity, leading to mental health issues, substance abuse, incarceration, foster care and the like.

It has to stop now. We know it’s happening, and we need to look for ways to provide the tools to all who need them, not just those who fit into antiquated or subjective categories.

These experiences also highlight the absolute necessity of reducing the challenges to caregivers and parents. I speak to you today from a place of privilege. Both my husband and I, who are together in a strong marriage, are well educated and have jobs that allow us to work from home so that we can earn a reasonable income to accomplish the tasks we need to do, attend weekly appointments.

We’re also able to home-educate our children, who can’t be served well in a bricks-and-mortar school. We are thankful that B.C. provides that opportunity. DL, in B.C., works very, very well for a number of children.

I work as a special education support teacher to kids who are being home-educated. For Jonathan, in particular, I would not want to put him back into any sort of a bricks-and-mortar school, simply because the flexibility and adaptability of being able to teach him, with his neurodiverse issues, at home works so much better than one could ever expect to happen in a class with one teacher and however many aides, even just the distraction of other children.

My husband and I have other privileges as well. We’re able to put our one child into independent school. Matthew attends an independent school. We’re also native English speakers. That allows us to navigate the system, which is never straightforward, always requires follow-up and is, to say the least, frustrating.

My husband and I don’t experience things like other exceptionalities or mental health issues. Also, as a team, my husband and I chose to live this life. It was something we went into with our eyes open. Without these privileges, we wouldn’t have the skills or the capacity that we do have to achieve what we do.

Even with those things, it’s not easy. Our precious children are thriving, which is our ultimate goal. But it hasn’t come without great personal, professional and financial sacrifice. I cannot imagine the insurmountable challenges to parents who don’t have these privileges.

Those are the people who aren’t here today, who aren’t able to speak to you, because they have to work, because they have to arrange for multiple caregivers — my kids are at three different places this morning — because they don’t have transportation, because of any multiple number of reasons. Those parents and caregivers and their challenges need to be acknowledged as well.

As a special education teacher, I’ve never had a parent come to me and share a concern about a possible neurodiversity for their child where I thought: “Oh no. You are totally incorrect. This child is fine.” In fact, teachers are often the ones who plead with parents to have their children assessed, diagnosed and supported. When they go and head down that path, instead of getting that diagnosis, they are excluded. We need to look for ways to include children in an appropriate diagnosis and to train professionals and educators to look for those ways.

In terms of accessing assessment, wait times need to be addressed, which is obvious. Telling parents of a child to wait until grade 2 or putting kids on a two-year waiting list or forcing parents to pay for private assessments, which many do at a risk of losing housing, going into debt, being unable to afford the other things that their kids need….

[11:25 a.m.]

You sit there, and you look at our four kids. Sometimes my husband and I joke: “Which kid do we love most today?” — as to where to put those dollars, to chase down which assessment or which equipment or which therapy which child needs.

N. Simons (Chair): Jennifer, just so you know, we’re going to run out of time.

J. Barkman: Perfect. So 30-odd years later this police officer, who desired that his children would serve the neurodiverse community, is now the grandfather of five kids who are adopted and are neurodiverse. He’s also now the husband of a wife with early-onset Alzheimer’s disease, a neurodiversity in itself. Sad? Yes. But a tragedy? Absolutely not.

The real tragedy is the extreme difficulty in accessing appropriate assessments and diagnosis. It’s clear that without accessible and timely assessments, diagnoses and support, future generations will continue to suffer from this lack of intervention. Let our families and our experiences inspire our province to move forward with best practices in all arenas.

N. Simons (Chair): Thank you, Jennifer. Well said. I really appreciate you bringing up the difficulty that many parents would have in coming here. I think when you speak, you’re speaking for them as well. We understand that there are some circumstances that we haven’t heard about, but you’ve done a very eloquent job of bringing those back to our attention. Thank you for that.

I look around at my committee members.

Laurie will have a question.

L. Throness: We hear such inspiring stories, and you’re one of those. Kudos to you for the task that you’ve undertaken. What a beautiful thing that you don’t see it as a burden. You see it as a positive thing. That’s great.

We have heard much, in our committee, about the difficulties of diagnosis and the waiting times for assessment and all of that. One person said that we ought to forget about diagnosis. We ought to just give kids the services that they need. Maybe we’re spending a lot of money on professionals and so on, when really what we need are just services. Could you speak to that?

J. Barkman: I mean, absolutely. That would just reduce…. Even within the school system, it has been a needs-based funding model rather than an assessment-based funding model.

Absolutely. It would just make things…. That would require a lot of things systemically too. As I eluded to, accessing some of those supports that are available to us requires a diagnosis federally as well. It would be great to have those supports, but then…. That’s a huge scope.

L. Throness: There would be some kind of diagnosis required still to say, “This kid needs something, and that kid doesn’t,” right? How might that work if the system were to go that way — more on a needs basis versus a diagnosis basis? There has to be a way of deciding who gets something and who doesn’t.

J. Barkman: How would it change?

L. Throness: Maybe my question is vague.

J. Barkman: If we could just walk in…. If you had every child who needed speech therapy able to access a speech therapist, how amazing would that be — without a diagnosis, to get all of these things? There are some places, though, where a diagnosis is very helpful, even in…You can have kids in speech….

This has happened in our community as well. They have a speech group at the child development centre. Anyone with a speech issue is able to come. You can access it. That’s great. My child also has FASD on top of speech issues. The one week we walked in, it was Halloween themed. Well, that is one of my child’s triggers. We go in, and we just had to get up and walk right out and leave speech.

Having those things that are tailored. Our other children are both deaf-blind. We found that when they were diagnosed with deaf-blindness, being able to access Canadian Deafblind…. That is not a government thing. It is outside of that. That has been an amazing support for us.

Yes, there are circumstances where just needs-based would be amazing — to be able to go in, to access, to get those kids started, to get ready for kindergarten, especially at a preschool age. There are other areas, I think, too, where a diagnosis is really helpful in targeting the specific things.

Having people come into homes is huge for us. Not having to take our children out, especially when you have four, especially when you have kids who are overstimulated — these are all things I’m sure you’ve heard — is huge.

I don’t know if that’s particularly helpful.

L. Throness: That’s helpful. Thank you.

N. Simons (Chair): Thank you so much, Jennifer. I really appreciate you sharing your story with us today.

Committee members, we will take a five-minute break.

The committee recessed from 11:30 a.m. to 11:42 a.m.

[N. Simons in the chair.]

N. Simons (Chair): Thank you, committee members. Thank you, friends in the gallery. We’re reconvening for our final presentation of the morning. We’re pleased that Claire MacLean is here.

We didn’t give much time to rest and get yourself accli­mated to this room, but we have a system where I’ll give you two minutes’ notice that your ten minutes are almost up. So that’s at eight minutes. I’ll try to be subtle. Then we’ll have questions.

Thank you. Welcome. You have the floor.

SHARE FAMILY AND COMMUNITY
SERVICES SOCIETY

C. MacLean: Thank you very much. My name is Claire MacLean. I’m the chief executive officer of SHARE Society. We’re a full-spectrum social service agency that serves the Tri-Cities community, New Westminster and some of Burnaby as well.

In terms of my background, I’m a speech-language pathologist by background. Before that, I was a behavioural interventionist for children with autism. I’ve spent the vast majority of my career supporting young children with special needs. I had the opportunity to work for the Ontario government at a time where they were implementing significant changes around policy for the screening and assessment and treatment of children with special needs and so worked on the policy and program implementation side of that.

Since moving back to B.C. to raise our family, I have come to SHARE. This is a lot of what we do as an organization and, certainly, a lot of what I’m passionate about, so I really appreciate the committee’s interest and attention to this group of kiddos that really needs our support.

I gave you a bit of a handout there, but I thought that it’s always important to start with the question of why we would assess a child. I think that may sound like an odd question, but I think that when you’re from the therapy discipline, it’s actually really important. Because for speech-language pathologists, for example, we often get children referred to us, because parents know that something isn’t going right, often. Their instincts are really strong. They bring their child in, because maybe they’re not saying their first words the same, or they went to a birthday party and something in their child’s behaviour just didn’t seem the same as other kids.

The nature of those supports is that they start from a very solution-focused place. When we talk about assessment, why would we assess a child? Really, the best practice of assessment is that it should be informing the path of care that we’re going to provide to that child or youth. That should be the whole purpose. It should provide, potentially, that child’s family — as well as for older children or for youth — with some other context or understanding for why they might have different challenges as well that helps them create a paradigm around that. It should support a culture of surveillance for those children and youth over time.

[11:45 a.m.]

In terms of how do we optimally assess children and youth, I think, again, this is something that, as a field and as professions, we know a lot about. We know that we have to look at the whole child, so we can’t splice off areas of their development and look at them in isolation of one another. We know, for example, that children’s behaviours are often directly tied to their language skills, and if we look at those separately, we’re going to miss really significant information and significant clues.

We also know that kids don’t exist in isolation. Youth don’t exist in isolation. If an assessment doesn’t take all those other factors into account — looking at the family factors, the socioeconomic factors, the cultural factors — then you’ve missed a key piece of information and you’re not actually doing a best-practice assessment. So you have to look at all those pieces.

We also know, as a best practice, that you have to include someone that has a trusted relationship with that child or youth. In most cases, hopefully, that’s going to be the parent. They have to play a pivotal role. If you don’t have that trusted relationship, you’re not going to have a trusted therapeutic relationship. Your assessment is already partially invalid. You also know that our assessment techniques have to be dynamic, and they have to span time. It can’t be a one-instance situation.

When we look at where the disconnects are…. You’ve had some really knowledgable people, I know, talk to you already about this, but I think it’s worth moving quickly through, and then we can talk about how we’re going to fix it.

I think assessments right now tend to be conducted at specialty centres by specialty providers. They’re outside the context of the broader child and youth service system that we have in place in this province. It’s this very isolated, disconnected process. It’s disconnected in terms of the timing, in terms of the information that’s able to be shared, the approach and the individuals that are involved.

You take a kiddo that may have been in early intervention, having a really trusted relationship with early intervention therapists, with development workers, with their child care staff, and then you plop them in for one couple-of-hours session, into an environment where the parent doesn’t know anybody, they’ve never been to the building before, and you expect something knowledgable and insightful to come out of that process. The people that know that child best, the staff that have been working with him, the parents, are not integral to that process right now.

We also know that we typically have really long wait-lists because we have created this very specialized process. So that in and of itself creates these long wait-lists and then even longer wait-lists to get reports and information back. That’s a huge stress- and anxiety-causer for our parents.

We also know that there are inefficiencies there, that these reports are often…. Because it’s isolated, they feel the need, under their professional regulations, to repeat the entire developmental history of the child, the entire medical history of the child, even though that information is well-documented in other professional records. So you have this inefficiency of reporting and this inefficiency of time that, again, just creates this backlog. Parents then get this report that tells them everything they already know. They were there when their child was born at 27 weeks for maturity. They’ve lived it all. They don’t need to read another report from me and another professional telling them about that traumatic moment in their own lives.

We also know that assessment processes right now tend to be very static. They tend to not be modified based on a child’s socioeconomic, cultural, linguistic — various, different needs, that they’re over-reliant on standardized tests, which obviously have a huge problem, especially for visible minorities, in terms of their validity, and that it’s not a dynamic assessment approach.

Dynamic assessment is all about, in a really simplistic way…. You know, rather than just saying, “You’ve got a weakness here; this is your area of need,” what dynamic assessment does is it says: “Well, you’ve got this area of need, and when I did this, it made it worse. When I made a room really noisy or when I created other distractions, your performance worsened. But when I did these things, your performance got better.” That tells us a lot about a child’s areas of needs and what their course of care will be, but typically, our assessments right now don’t do that.

How do we get it better? One would be to integrate this system of assessment, which is, right now, separate from our early intervention system — to integrate them. So whether you call that a community health centre model or how you want to describe that — but really about looking at….

We know that kids with neurodiversity needs need a multidisciplinary approach, and we already have those staff funded and paid for through this government. By integrating the two systems, you’re going to have efficiencies, and it’s also going to be a much better service experience for the parents and for the kids. It’s also those programs that are often referring to these specialized assessments, so we could cut down on a lot of those layers of bureaucracy and a lot of the need that parents have right now to tell their story over and over and over to different people by having that be integrated.

[11:50 a.m.]

The services would also be in trusted community locations, so it would be close to home, places parents are already familiar with, that they trust, and they could be seamlessly folded into that continuum that we’re already doing of surveillance. We’ve already done a lot of work around educating child care providers, around educating StrongStart staff around what to look for. What are red flags for development? If we integrate assessment into that, it’s going to be, again, all the more efficient and more accurate, as well, for kids.

We’ll be able to tell the difference between a child whose mom and dad are going through financial strife — so it’s a really stressful home right now, and the child is acting out and has some diminished skills because of that — versus a child that truly has a neurodiversity.

People that love and trust and are involved in those kids’ lives know the difference. They’re able to look for those differences over time, but if you just pop in and visit that child one time on a Monday morning when everything’s falling apart before they’re dropped off at daycare, that child is going to look a lot less high performing or a lot less typical. We need to take this approach of recognizing that kids can’t just be judged in a two-hour window.

I would also say that we need to incorporate emotional supports for parents into this process. Right now, there’s no recognition, I think, of the trauma that this places on parents in terms of when they have to live through these experiences, make sure that the processes and materials are culturally appropriate, and really, again, frame it as an ongoing process.

Weekend and evening hours, free parking. Right now, a lot of our sites are at hospitals, and it’s incredibly expensive. So SHARE, for example, has had to provide funding support to families so they can attend their assessment appointments at these specialty centres, because they can’t afford the parking.

I know I’ve got little time. I’ll tell you one story about a family we served. They’re a refugee family, came to our food bank initially, which is often how folks sometimes interact with our services. A two-year-old son. Definitely were some needs there and some delayed development that our staff noticed. They got him hooked up to one of our parent-and-tot drop-in programs, which is a really informal, really welcoming, culturally appropriate program.

From there, the speech pathologist visited. They formed a trusting relationship. So the little one was in care with the speech pathologist, still seeing signs over time that made us think assessment would be appropriate. We referred to one of these specialty centres — long wait-list. When they finally got the call, mom didn’t know. She doesn’t trust a number she doesn’t know, especially when they come up as things like Fraser Health or any kind of government authority. There’s a lack of trust there because of her own refugee background.

Mom didn’t return the call. The file was closed. No notification was given to the referring agent of the speech pathologist. It was only months later that the speech pathologist went back and said: “What’s happening with this?” “Oh, well, the file has been closed. Unable to contact.”

Contrast that with, as this family has this trusted relationship in our community now, if there was a pediatrician or a psychologist on site in the building that could just walk down the hallway one day and get introduced to Maya and Sammy. They could sit in on one of the speech pathologist’s sessions and perhaps provide some suggestions to the speech pathologist of “try this,” or “can you check that?” So it’s done in a really barrier-free, really culturally appropriate way, in a trusted setting already, and they don’t have to rewrite because they can share the electronic client record that already exists. They don’t have to rewrite the report, and there’s a treatment plan that goes forward together from there. That would be our ideal future state, from our perspective.

N. Simons (Chair): Well done. Very well done and comprehensive. Really appreciate this.

Michelle has a question for you.

M. Stilwell (Deputy Chair): Thank you, Claire. It was very succinct, very well to point out.

Your organization sounds a lot like the Society of Organized Services that I have in Parksville-Qualicum. You deliver a lot of services to a lot of people in your community on a vast array of things.

In regards to your perfect future-state case study, can you tell me what the timeline was for the reality? When you’re looking at your dream perfect future state, what would that timeline be? What we hear and have heard over the weeks is on wait-lists and how long it takes. If this is your future-state perfect scenario, how long do you anticipate that going from beginning to end, where they’ve been connected and gotten your services and have a plan?

C. MacLean: The only caution I would have about putting a specific thing on it is that it should be dynamic. It should be that…. In my perfect state, that future state, you would pull in other people that need to be on that team.

Not all kids with neurodiversity need to see a pediatrician or psychologist on a regular basis. For some of them, really, it’s about getting…. They’ll end up getting diagnosed, but they have a care team around them that has a really good handle on it. It’s not a particularly complex presentation, so that team could keep going.

[11:55 a.m.]

In those cases where the staff person is co-located, where you have a psychologist or a pediatrician on site, I would suggest that you could have a couple-month wait-list for it. You wouldn’t need to spend hours doing assessments that have already been done and duplicated, and they have access to that information. The pediatrician trusts the speech pathologist and knows their judgment is sound because they’ve formed a working relationship.

I think where it gets…. Then you have kids that need that ongoing support. You’re going to have a longer…. But right now, I mean, it’s 18 months or longer sometimes, depending on where they’re referring. I think you’re waiting for something that parents put a lot of hope into, but then nothing changes afterwards. So it’s also this false dichotomy of “What am I waiting for?” and “What’s going to change after?” and it doesn’t quite happen.

M. Stilwell (Deputy Chair): I think you spoke to one of my biggest frustrations as a parent who has gone through the journey — the duplication of repeating your story over and over again to a different professional, moving yourself down the line, thinking you’re accomplishing something that you’re not actually getting to. In the meantime, your child isn’t getting served and getting the intervention they need to fill their toolbox so that they can be successful.

C. MacLean: Absolutely.

N. Simons (Chair): Laurie, you have a question.

L. Throness: Just a couple of short questions. How does SHARE differ from a CDC — a child development centre — or is it really a child development centre with a different name?

C. MacLean: No. It’s a great question. I would say we encompass a lot of what a child development centre does and more. We also have a whole range of substance use and substance use prevention services for youth and adults, a whole spectrum of counselling and mental health services for children all the way through to seniors, an affordable housing piece, seniors services.

I would say we do a lot of the child development programs. We also partner very closely with other organizations in our community that kind of fill those other pieces.

L. Throness: You started your presentation by talking about the importance of assessment and professional assessment early on. Other presenters have talked about how they feel that’s not essential — that it’s essential that children get services immediately, and then you worry about diagnosis later. Can you talk about that? That’s a big thing that’s come out.

C. MacLean: I think it’s fair. I have two hats when I answer that, or even three — a mom hat, a speech pathologist hat and a former public servant hat. I would say that we exist in a system that’s been created where you need labels in order to access support. That’s true of our education system right now. It’s true of autism services, as a good example.

Is that always the best approach? I would suggest not. I would suggest that the best approach is that we stop focusing on a label and instead focus on the barriers a child is facing or not. I mean, some children with autism require far less degree of support than children who maybe don’t meet that criteria but have social communication impairments.

So I don’t think labels are always particularly helpful. I think the process of assessment is meant to be helpful. It is meant to be about determining what is going on. What are your needs? How does intervention help? It’s the same way that doctors don’t give pills and then walk away and never talk to us again. They give you a blood pressure pill, and then they check your blood pressure again. It’s the same conversation.

We have created a system where we have severed assessment from intervention. To me, that’s the bigger problem. The reality of labelling, I think, is a controversial one. I think if you were looking at broader system changes, ideally we could get away from that. I don’t know that…. That’s a hard rock to roll back up the hill.

L. Throness: But you would see assessment and diagnosis as the gateway to services, not the reverse.

C. MacLean: I wouldn’t say they were the gateway, because these children are already in service. These youth are already in service. They’re in child care. They’re seeing speech pathologists. My point is that it is one system already, from a child’s and a family’s perspective. They didn’t pop into the world and start existing because all of a sudden the pediatrician and the psychologist saw them. Those people are just one more piece to the team that can provide a layer of expertise. But they’re already in service. I think that’s part of, you know….

To Ms. Stillwell’s comment, parents think that something is going to happen when they get an assessment, and often, especially for kids with neurodiversity needs, it’s not. There is no medication, necessarily, for a lot of these kids that’s going to fix it right away. It is part of their ongoing journey. It’s one more piece of the puzzle that will continue to morph and evolve as they get older. So to label it as this kind of milestone that will be a game changer is a real disservice to parents. But if we labelled it as just part of early invention, a scope of services you get depending on what you need, it would start to change the whole mindset.

N. Simons (Chair): I think sometimes we hear about the assessment being a game changer. Sometimes we hear parents who finally have an answer to questions, but it’s not more significant than that. That’s significant but…. Sometimes it’s a trigger for funding, potentially.

I really appreciate the nuance you provide and your presentation. Very interesting. I appreciate the work you do, and I hope that we can continue to try to improve the system, with your help and with everyone’s help. Thank you.

C. MacLean: It’s great to have the conversation. Thank you so much.

N. Simons (Chair): Well, committee members, we have our scheduled break. We have things we, perhaps, need to do. So we’ll now recess.

The committee recessed from 12 noon to 1 p.m.

[N. Simons in the chair.]

N. Simons (Chair): Welcome to the Select Standing Committee on Children and Youth. We have a number of presentations this afternoon.

Our system is that you have ten minutes to present — I’ll give you a little reminder at two minutes — and then we have time for questions. That would be great. So thanks for coming today.

For those members, it’s Naomi McCann.

Go ahead.

NAOMI McCANN

N. McCann: Thank you. My journey began June 29, 2007, at 11:09 p.m., the day my son was born. He had so many challenges, from infancy to even today. Even though he is very verbal today, challenges weren’t small, from feeding to dressing to going to preschool, learning the alphabet.

He had no language whatsoever in the early years. He started speaking when he started kindergarten, which was interesting enough, and then when he started speaking, that was it. He speaks all the time, non-stop.

He was finally diagnosed at the age of eight, in December of 2015, with autism. He also has severe ADHD. He also has severe anxiety. Lucas can no longer be in school. No matter what we’ve tried, what we’ve done — part days, half days, one hour, EAs, no EAs — he just can’t function.

I wish I could wave a magic wand to say that he can function in school. He did for a long time. From kindergarten to grade 4, we were successful. I don’t know what about grade 5 changed for him, but he regressed. He stopped speaking. He was bolting. He was lost, crying for help, no one to listen.

I decided to pull him out, January 2019, from public school. It was the camel that broke the back — excessive phone calls to child protection services from the school saying he was being abused. “These are the reasons why he has these severe behaviours, not because of his disability but because of severe abuse at home.” I currently have an open CPS file. It’s been open since September. It is now May. There are no protection concerns whatsoever. Concerns started at school, remained at school, and his behaviours developed there.

He’s a happy almost 12-year-old who loves Tesla cars, very smart. He just needs encouragement in the right way, someone to guide him, to reinforce his good behaviours and not his negative behaviours — his bolting, his screaming, his throwing chairs. I wish I could fix that for him, but I’m tired. Mom is tired. He’s not the only child I have at home. I also have a nine-year-old daughter, also with autism, ADHD, disruptive mood dysregulation disorder and mental health issues.

[1:05 p.m.]

I can only advocate for one child at this point. There are not enough resources for him at school. There are not enough resources for her at school. I home-school one of them, and I’m actually on the fence about home-schooling my second because of the phone calls — not only for me to pick them up early but to MCFD with false claims of abuse.

I wish I knew where to start, how to fix the problems in schools. I know that they struggle. I know that they mean well, but they go about it in the wrong ways. They make the parents the enemies instead of their allies. I’ve felt like an enemy in this school district for the last two years.

I came from Vancouver. My kids were in school district 39. Unbelievable support. I don’t know if it was because it was an inner-city school, but they actually cared. I felt that they cared. They were there for the kids.

Here I don’t feel that they’re here for the kids. I feel that they’re just a dollar sign to the school districts. They’re just a dollar sign. When you ask for supports or fidgets or wiggle seats — things that, sure, parents could cover, but we’re also paying out of pocket for services at this point — they always say: “There’s no money for these things. You’re going to have to provide them.”

When you do provide them, they’re like: “Well, he can’t just use them. It has to be open for all the other students too.” I’m not here to fund education for everybody. I’m here to fund education for, at least, my child — or attempt to.

Countless things that I’ve provided have gone missing or been broken. I get it. It is what it is. But districts saying that there is no money for designated kids…. There’s no money for any of the kids. It’s a sad truth.

Stop making the parents the enemy is the number one goal for me. We aren’t the enemy. If anything, we know our child backwards, forwards, upside down, inside out. We know what they want. We know what they need. We know what their behaviour means.

A little boy who’s 11 is not throwing a chair because he’s scared or he’s bored. He’s frustrated to the point where the only way he’s going to communicate is pushing somebody, screaming at them, throwing things at them, because they’re not listening to the non-communicative behaviours.

That’s all I’ve got.

N. Simons (Chair): It’s generous of you to share your story with us. We appreciate that.

I look to my colleagues to see if there are follow-up questions. There are not always follow-up questions.

I wonder if you’ve attempted or have had any success at all in working on the communication with the school.

N. McCann: I’ve done everything I possibly can. I’ve gone to the district principal, to the associated district’s principal, to the superintendent. I’ve gone to the district board meetings and presented my questions, with very little help. I had to stop the torture to my child. I felt like he was just being tortured.

N. Simons (Chair): Laurie’s going to have a follow-up here.

L. Throness: So you’re saying that the school district made no accommodations for your child, just treated him as a regular student in the classroom?

N. McCann: They treated him like a regular student. Everybody had the same supports. They weren’t doing anything above and beyond, nothing specific for his disability. No trained EA that knows ABA, how to take simple data.

[1:10 p.m.]

It was always up to myself or my team to advocate for these services, and they fell on deaf ears.

L. Throness: A child, I believe, gets about $18,000 a year for special needs once they’re diagnosed. That amount did come to the school board. When you point that out to them, what do they say?

N. McCann: It’s not child-specific. It goes to the district, and the district foresees how it gets spent.

L. Throness: Are there other parents in your situation?

N. McCann: Hundreds. We all go to the district board meetings every month. We ask our questions. We are currently sitting on pins and needles to tell us how many EA hours our children will get for next year, or if they will get any time at all.

N. Simons (Chair): Naomi, you mentioned your team. Who do you call your team?

N. McCann: I have Alysha Paiaro, who’s an occupational therapist. She’s been with us for three years. Christine Eadon, our behavioural consultant, who’s been on our team for two years. Myself, and countless parent advocates. We band together and go to our IEP meetings, being that second set of eyes that might offer another suggestion.

That’s about it. Sometimes I feel like it’s me against the world.

N. Simons (Chair): Well, you and your team.

N. McCann: Yeah.

N. Simons (Chair): Ronna-Rae has a question.

R. Leonard: I’m glad you explored that a little bit more, about the team.

I’m interested in the peer support that you mentioned — that you help one another by going and being the ears. Kind of like when you’ve got to go to the doctors and hear bad news, it’s good to have somebody with you. How did that happen? One of the things we hear is how difficult it is to find time to do anything beyond your constant focus on your child.

N. McCann: Well, there is an awesome group on Facebook called BCEdAccess. They help us advocate, steps to follow. They’re there for support, whether in person or through emails and double-checking your emails that you want to send to the district. “How does this sound? Do I sound too emotional?”

We’re there to lift each other up and offer support to our parents, because we know we’re not just the ones. The group currently has over 1,600 members in that group. It’s not a small group. And it’s just B.C.

N. Simons (Chair): We heard from them yesterday in Victoria.

Well, thank you so much for coming. We really appreciate it.

N. McCann: Thank you.

N. Simons (Chair): All right, committee members, I believe we have Ray and Lisa Warnock presenting to our committee now.

Welcome to the committee and to the table. We have the ten-minute thing, the two-minute warning. You’re all familiar with that.

R. Warnock: Yes.

N. Simons (Chair): Thank you. You have the floor.

LISA WARNOCK, RAY WARNOCK

L. Warnock: My name is Lisa.

R. Warnock: I’m Ray.

L. Warnock: This is my husband, Ray. We are parents, and we’re also teachers. I’ve been a teacher in the Surrey district. This is my 30th year of teaching.

R. Warnock: I’ve been teaching for 24 years in the Surrey district.

L. Warnock: Our oldest daughter has been teaching for six years, I think.

We have 11 children who’ve all been through the district. We became foster parents six years ago, and subsequently ended up adopting a sibling group of seven children.

R. Warnock: In addition to our four biological children.

L. Warnock: Those seven children are all diagnosed with FAS. Two of them have developmental delays.

I guess what we want to talk about are the struggles we’ve had as parents but also as teachers in the system. Over 30 years of teaching, I think if I was going to sum it up, what I’ve seen, it feels like there’s less and less support for teachers.

[1:15 p.m.]

There seems to be more and more paperwork required in the system but less actual support being provided for students. Assessments are difficult. Definitely, in our district, people think it’s a joke — the wait-list for assessments. But those assessments aren’t normally…. I’ve never experienced them being made for neurodiverse special needs. It’s generally to discover learning disabilities. Parents basically have to go in the community to get the diagnosis, and then that’s a wait-list of at least two years.

Once the diagnosis is made, though, even though they are given a chronic health designation, it doesn’t necessarily mean support will be given to your child. Even though the funds will be given, the support is not necessarily given. That’s the answer that the district gives. They’ve said it’s determined at each school — the amount of support provided for that child. Unfortunately, it was only when our children began hitting, kicking, spitting on their teacher that district people came in, a safety plan was made and then support was given at a more effective level.

An example of that…. Our youngest child is five, and out of the ones with FAS, the oldest is 15 — so seven children in a ten-year span of five to 15. The ones in elementary school — we’ve had to fight for every bit of support for them. They’re all different from each other, so of course the support they need is different from each other. There’s not like a blanket…. It has to be individualized.

The problem is…. One daughter in particular, who’s nine, received the support after almost daily kicking, hitting, biting her teacher and the EA and clearing the classroom. The other children had to clear the classroom.

Then, after she received the one-on-one support, she achieved some success, and then the supports were pulled back because: “She’s doing great now. She’s meeting the goals.” This is the system that we work in, where supports are pulled away once the success is met, not recognizing that maybe the reason the success is being achieved is because there are supports in place. To put that child through a roller-coaster, where they receive the support, achieve success, it’s pulled, then they struggle…. You know, that’s not adequate.

The other problem I’m seeing is with IEPs. They’re supposed to be an individualized education plan for children, and, really, they’re not. They’re a bit of a joke. I think for parents and teachers — many people would say they’re more of a token support. Now, sometimes they can be effective. That’s the hope and the goal. But I think a lot of parents come away frustrated — and even teachers — thinking: “This is just a….” What’s the word?

R. Warnock: Paper trail.

L. Warnock: Exactly.

R. Warnock: To show that the money’s being allocated.

L. Warnock: Right. Because, really, the goals that are being set…. I don’t know if the proper people are giving input as to what those goals should be. I think there does need to be more parent input, because they do know their children well. Really, there’s very little time given to that process. There’s a half-hour meeting at the beginning of the year to determine what those goals are, and then at the end of the year there’s kind of like a token meeting where we can check off what’s been measured.

Another example is in the high school. We have three boys in high school. All of them are on an IEP. Two of them, though, are really receiving…. Even though they have an IEP, unfortunately there’s kind of a disconnect between the teachers of the classes that they’re taking. So they’re basically being treated just the same as all of the other students with the same expectations. So they’re failing their courses, but what’s missing is that a lot of teachers don’t understand that there are memory deficits. There’s a lot….

[1:20 p.m.]

You have to change the way you instruct those particular children with neurodiverse special needs. It’s not fair to put the same expectations on them as everyone else. Otherwise, they’re going to fail, and the system is going to fail them.

The third boy that we have in the high school has FAS, but unfortunately, his IQ is low. It’s in the 70s, but it wasn’t quite low enough. So technically, he didn’t really qualify for the BASES program in the schools. But really, that’s the kind of program that he needs. He cannot navigate the academic stream himself, even with LST support. He needs life skills.

If we’re thinking ahead for these kids and what they need…. His needs are not being met in the regular stream. Therefore, there have to be, I believe, changes made to the criteria for the programs in our school systems so that the needs of these kids are being met in a way that they will become productive members of society.

R. Warnock: If I could interject too. It’s not a teacher-bash. Being teachers, we know that time is really valuable. As teachers ourselves, we don’t have the time to spend with the files and understand our students individually. I think it would probably be much more difficult at a high school level. Your hands are really tied as far as finding time to evaluate the IEP and understand how that’s going to affect your students’ individual education.

Teachers, I think, work really hard, but it’s just a matter of having time to understand who their students are and what the IEPs are saying, if they’re going to be useful.

N. Simons (Chair): Are you okay with questions, at this point?

L. Warnock: Sure.

R. Warnock: Sure.

N. Simons (Chair): Okay, because I know that Laurie’s got one.

Michelle, you’re first, because you’re Deputy, and you were first, actually. I just forgot.

M. Stilwell (Deputy Chair): Just a couple of quick questions and then the longer one. Are you both high school teachers?

L. Warnock: Elementary.

R. Warnock: We’re on leave of absence right now.

L. Warnock: For our last adoption.

M. Stilwell (Deputy Chair): Amazing story — to take on seven siblings and bring them into your home and give them the love and the support that they need to be successful in life. Listening to your story, I hear the executive planning skills and those functions that FASD kids struggle with. When they don’t get that support, they can’t fill their toolbox to be successful.

You’ve been in this job for 30 years, teaching, which is phenomenal in itself. My question is…. Over that 30-year span, you were saying that it seems like there’s less and less support. What can you say to the prevalence of more and more challenges in the classrooms — that there are more children with needs and more diagnoses being made in the classroom versus 30 years ago?

L. Warnock: I did think about this a fair bit. I believe in inclusion. I think it’s a positive thing. But I also see that it’s important, with inclusion, to provide supports for that inclusion to be successful.

There used to be more schools that had classrooms where kids who were not functioning in the classroom could go. It was different for different children. Some of them would be in the classroom for the majority of the time and go out for a short amount of time. Other children were in that room basically for the bulk of the time, and they might join a classroom for music or P.E. But then they basically had a team of special needs people who all understood those children and their needs and were able to, together….

Right now it just sort of feels like people all feel alone as they’re struggling to figure out how to best work with these children. I felt like, when we had that model, there were some positive things about that, because that team was able to offer support to each other. It was a combination…. It’s kind of like the BASES program in high school, where teachers and EAs work together to come up with a plan for each of the children and then figure out how to implement that. I think that’s part of it.

[1:25 p.m.]

R. Warnock: As opposed to…. Our experience has been that when there’s a child who is autistic or has FAS or behavioural difficulties and who because of those things can’t manage staying in a classroom, they’re taken out by an EA. They walk around the school and count butterflies. It just doesn’t seem as productive.

L. Warnock: It seems more reactive than proactive. To me, that’s always a mistake. It’s not good planning.

N. Simons (Chair): Well said.

L. Throness: Really, Michelle anticipated my question. I wanted to draw on your experience. It used to be that there were special classes for children with special needs. Now the whole concentration of the system is on integration, right? You’re going to say that that child has neurotypical behaviours and put them in with neurotypical-behaviour children so that they can be integrated for reasons of self-esteem or other reasons.

What do you think about that model? That’s the model that the whole system runs by now. It’s a very delicate question, because there is a lot of emotion that follows along with the change. I’m wondering if you could just comment on the model and how you would see an ideal model, if that’s not ideal.

L. Warnock: We both ended up going back to school to get our special ed diplomas, not because we were going to specialize in that sort of teaching but because those children were in our classrooms. We wanted to know how to be better teachers to work with them.

It is a delicate question. One of our biological children also has special needs, with spina bifida. You know, there are pros and cons to each model. But to me, what it feels like is that we’re giving more token support, where we say they’re in the classroom, but often they’re not. They’re doing something completely different than the rest of the children in the classroom.

So there’s a time for…. There have been so many positives. I truly believe that children with special needs are part of our community and our world, and they should be…. You know, when I grew up in school, they were hidden away. I’m opposed to that. But I think that there has to be a….

It’s almost like the pendulum swung, but nobody really put some forethought into how to make the new model work and be effective, because basically, you’re leaving a lot of the staff working with the children who are just now expected to do everything. They’re not all specialists. Not all teachers are specialists. So a lot of parents get frustrated because the teachers don’t necessarily understand their child’s special needs.

R. Warnock: The idea of calling it a model…. I know, functionally, that’s really what it is, but I think that by doing that we take the emphasis off the individual education plan. There are some models that are going to work for one student that won’t work for another. Maybe the answer is a combination, which we’ve seen in action at the high school that we think has been fairly effective for our own children. But it’s not practised at our level.

L. Warnock: Even though our one son, who’s in the BASES program, didn’t technically qualify to be in the BASES program, because of the kindness and the…. I mean, there’s an amazing teacher who runs that program. He understands it. He gets it. He knows that FAS brings executive functioning skills that together, combined with the low IQ, necessitates that he has kind of a combination. So he works with us to try to come up with an individualized program for that child so that he has some classes, but he also spends some time in the BASES room doing more life skills sorts of things.

There has to be more of a flexibility like that because, as Ray just mentioned and as I mentioned earlier, our seven children with FAS — and I also have a brother with FAS who lives with us as well — are all different. It’s a spectrum. That’s because you can’t box them and say: “This is what each of them needs.”

Somehow we have to figure out a way to come up with a…. I don’t know if this is through the school-based teams or…. I know there are a lot of parents that would like more input. I think there are a lot of people, different players in the system, who need to have input into thinking about that particular child and what works best — not just have an IEP sheet that you check off and you really could check off the same thing for any child. Then it’s not an individualized education plan.

[1:30 p.m.]

N. Simons (Chair): Right. We’re short on time, but okay.

Thank you very much for your presentation today and your sharing it with us.

Calling up to the table now Diana Salcedo. Welcome to the committee. Thank you for coming.

D. Salcedo: Thank you so much for having me.

N. Simons (Chair): We’re hoping to…. We learn from everyone, so we appreciate your time.

D. Salcedo: Thank you for having me here today. I’m just going to read a short document, if you don’t mind.

N. Simons (Chair): That’s okay.

DIANA SALCEDO

D. Salcedo: Before turning to the issue that has brought us together today, I just would like to express my thanks to the committee members for giving us this opportunity and for listening to our concerns and, of course, for taking into consideration our suggestions today.

We have welcomed the creation of the children and youth with special needs service framework, and we hope this consultation will also bring greater consistency and effectiveness to the quality of services offered and delivered to the At Home program.

This is my son here. His name is Emiliano Hernandez. He’s a Canadian citizen. He is four years old. He is deaf, blind, has dyskinetic cerebral palsy, and he’s one of the hundreds of children with neurodiverse special needs whose human rights are being neglected.

Our families are reaching capacity as we strive to care for our complex kids and the rest of our family’s needs without an adequate network of policies and programs to support us. Meeting the daily needs of our medically complex children is extremely consuming and financially challenging. Not having a proper system of support in place is having an impact on our ability to properly care for our children and guarantee their safety.

We strongly believe that the system of services to support our children must be urgently overhauled. Too many of our children are falling through the cracks and are being denied access to the most fundamental rights of children with disabilities, such as appropriate therapeutic services and basic medical equipment. It is only a matter of time before we see another vulnerable child like Charlie being rescued by the police in a state of undernourishment and isolation.

A great number of our families are single-income earners who are underemployed due to the difficulty that it entails providing 24-7 care for our children. As unpaid caregivers, many of us struggle financially as our employment and economic situation deteriorates. We have to cover from our pocket extraordinary expenses, including therapies, positioning and mobility equipment, communication devices, caregiving and respite services, as well as expensive home adaptations and accessible vehicles.

A great deal of our time and energy is spent on the personal care routines of our complex kids. Lifting, bathing, toileting, feeding, changing, attending medical appointments and therapy sessions, following treatments, driving back and forth as well as navigating the current system to access the services they require leave us feeling physically drained and mentally exhausted.

Although we are aware of the potential harmful effects institutionalization can have on a child and we recognize the right of our children to live within a family setting, we feel less and less capable of caring for them at home due to the lack of support and financial hardship that a great number of us experience on a daily basis. Knowing that we don’t have the ability and the resources to help our children be safe and fulfil their potential makes us feel frustrated and helpless. Caring for a family member with a severe disability is one of the most challenging jobs there is.

While, recently, increases in payments have been announced for foster parents, adoptive parents, relatives caring for children in B.C., and so on, caregiver support to parents caring for severely disabled children has not even been contemplated. We believe it is imperative to have standardized approaches to assessing caregiving situations and developing programs to support caregivers based on a consistent set of values and principles. The absence of appropriate support is putting parents in a situation of social and physical risk, hindering our ability to sustain our roles as caregivers and threatening our families’ stability.

[1:35 p.m.]

We believe that the current state of underfunding of programs like the At Home program, as well as the lack of periodic evaluations to reassess the needs of its target population, have undermined its ability to provide enough and responsive support to our children. The program has seen very minimal funding increases since its inception in 1989, and this has led to its steady erosion.

We need a system that works effectively for all of our families, based on a more flexible structure and where programs and services are designed and delivered using a family-centred approach.

I will now provide a brief summary of four of our main concerns. First, the higher levels of stress and financial hardship experienced by parents of children with severe disabilities because of the challenges that arise from providing 24-7 care for our children without having access to any type of caregiving support or significant respite benefits.

The dreadful state of funding for therapies and early intervention programs that are of central importance for the development of children with disabilities in order to improve their health and obtain the maximal level of independence and inclusion.

The current state of funding for medical equipment and communication devices that improves our children’s health and quality of life and allows them to participate in society and fully enjoy all human rights and fundamental freedoms.

The total lack of support in government programs directed to aid families with the cost of accessible vehicles and housing adaptations so that our children are able to participate in society in a dignified and safe manner.

Today I will share a document with you. I have it in an electronic version. This document has been prepared by B.C. Parents of Complex Kids, which is a group of 300 families with children receiving funding from the At Home program. This report is the result of a long process in which families have invested valuable time to provide input.

For the past two years, through social networks and various other means of participation, we have been sharing common challenges and experiences arising from the care of our complex children as we navigate the current system of support. We have managed to pinpoint our most urgent concerns, and we provide a series of recommendations and suggestions throughout this document. We thank you in advance for listening to our collective voices and for considering our suggestions.

N. Simons (Chair): I’d like to thank you for your very succinct and clear message to us. I’d like to point out that we’re undertaking this consultation because we recognize that there are places that need improvement. Your contribution is going to help us. I hope you recognize that. We certainly heard your words very clearly.

I look to my colleagues.

Laurie, have you got a question?

L. Throness: Thank you for your love and perseverance for your son, and for coming here today. I wanted to ask what kinds of supports you do receive from government. There’s much that you do not receive, but what do you receive?

D. Salcedo: Through the At Home program, we receive respite benefits, which is $233 monthly. It’s 2.5 hours of respite benefits weekly, which is absolutely nothing for us. It’s meaningless. We can’t even get to hire someone to commit to working only 2.5 hours weekly. It doesn’t really relieve any of the physical stress and emotional stress that we’re dealing with.

We also receive medical benefits. We have a feeding pump. We receive hearing aids and this type of medical equipment. We also receive an amount for mobility equipment. We received $3,200 for this type of equipment. My son needs a wheelchair, a walker, a standing frame, a sitting system, and our stander alone is $7,000.

Of four pieces of equipment, what we are receiving is useful for covering 50 percent of one of those pieces. The rest of them we got through charity and from our own pocket. Going to charities is a very complicated thing to do. You have to go there, knock on doors and have the income tested, and then you have to wait for a month to get that. Then it could take a year after you get your stander. All these pieces are not just for their comfort. They are pieces that are medically important for them in order to avoid dysplasia of the hips or scoliosis of the back. These pieces are extremely important for them.

[1:40 p.m.]

L. Throness: You would have the option, you said, of giving your child to MCFD or to a foster home to take care of that child in total, and the government would pay everything then, right?

D. Salcedo: Yeah, the government will pay everything.

L. Throness: But they won’t pay you to take care of that child. They will pay someone else to take care of your child.

D. Salcedo: It’s extremely expensive to have kids institutionalized. I will never do that. I’ll never give my kid…. I understand some parents have to do it, because they’re in very difficult situations. Yeah. But it’s something that a lot of people are considering, because it’s just unbearable to be dealing with all this stress.

We have another son who’s five years old. It’s just extremely challenging to work out a way of getting everyone’s needs met. So that’s what we’re receiving.

I’d like to share with you a quick story about my son. Communication devices are not covered at all by the At Home program. They are covered for autistic children, but not for our kids. So my Emiliano is not verbal. However, a year and half ago, his OT told me about a system where…. He can move one of his hands pretty well. So with that system, he will have an iPad and a switch. Then he will start learning how to communicate through the iPad through icons, through letters. In that way, he will learn how to read, how to write, and how to read a book, how to let us know what we wants.

We waited for a year and half to get our appointment so he could be assessed for that. Then it just happened last April. They approved him. He was a candidate, because he did well in the trial. Then they told us: “Okay. Now you’re going to be put on the wait-list. As soon as we have equipment available, you can borrow it for six months.”

So my son is going to be losing almost two years of being able to communicate with us, because we don’t have access to this kind of equipment. That’s like violating one of his fundamental human rights of being able to communicate in a way he can. This is just one small example of why things are not working good for our children. They’re the most vulnerable population there is. They don’t have a voice. They can’t even pronounce words sometimes.

We are there for them, but we are extremely exhausted. It takes so much energy and time to advocate for them. But the situation is getting to the point that we don’t have any more options. That’s why we have come together and started sharing experiences, because we know stories from families that are going through hell, to be honest.

The only way to raise our voices is if we start to, even if we’re tired, even if we’re running on two hours of sleep a day. We need to take some time to be able to get here and to let our concerns, let our voices…. The decision-makers are sometimes are very familiar with the situations we’re living, that we’re dealing with.

N. Simons (Chair): I think that every time we hear from somebody, I’m glad that we’re having this opportunity. Even though it’s extremely challenging for you to even make the time to come and speak, it’s so vitally important. As I’ve said to others, you’re speaking on behalf of many other voices who, for other reasons, may be in situations that would be difficult to describe. We recognize that. I always hope that there’s more advocacy. Until the system becomes stronger, advocacy is important.

Have you had an opportunity to contact the Represen­tative for Children and Youth, for example?

D. Salcedo: Yeah. This report that I will be sharing with you has been sent to a lot of places, including the representative and different ministries. So we try to share it by email to as much as…. I think you have a copy already, right?

N. Simons (Chair): We have a copy.

D. Salcedo: Yeah. We sent that to you from our email address.

[1:45 p.m.]

N. Simons (Chair): In terms of the individual advocacy for the specific families, for your specific family or for people you know, do they know about the ability of the representative’s office to advocate on your behalf?

D. Salcedo: They don’t, to be honest. Like, for 90 percent of the moms that I know, this is totally alien for them. They don’t know that they can get their voice heard, and they can go to someone. They don’t even know their kids have rights. Sometimes they don’t even know that their kid is disabled.

I have many moms that are like: “Oh, my son is deaf. Oh yeah, so he has a disability. Is that disability?” It’s just like…. We’re just not getting the information we need from the people that are providing services.

N. Simons (Chair): Well, I thank you again. We don’t make promises here, but your voice has been heard, and the voice will be reflected in the report that we provide to government.

D. Salcedo: Thank you for the opportunity.

N. Simons (Chair): Shobna Gounder, thank you. Welcome to the committee. Thank you for coming. Every presenter has ten minutes and then five minutes for questions after. Usually I give somebody two minutes’ notice before their ten minutes run out. You have the floor.

SHOBNA GOUNDER

S. Gounder: Good afternoon, members of the standing committee. My name is Shobna, and my son has ADHD, which stands for attention deficit hyperactivity disorder. He attends grade 1 in the Surrey school district. He’s seven years old, and he was diagnosed with ADHD at age five, when he was in kindergarten. He’s taking medication for his ADHD. My son has the combined type, which means he struggles with inattentiveness, impulsivity and hyperactivity.

ADHD is a brain disorder marked by an ongoing pattern of inattention and/or hyperactivity and impulsivity, and it interferes with functioning or development. It is also the most common childhood neurodevelopmental disorder, affecting one to three children in every classroom. ADHD affects the prefrontal cortex of the brain, which is responsible for executive function. Executive function impacts the ability to focus, organize, plan and use working memory.

ADHD children also have a developmental lag of 30 percent and struggle with emotional- and self-regulation. So my son, who is seven years old, after you factor in the 30 percent lag, has a brain of a five-year-old. ADHD being a brain disorder means children with ADHD have different learning needs, since their brains are wired differently. Therefore, ADHD diagnoses should be recognized as children with neurodiverse special needs.

Since my son was diagnosed with ADHD, I’ve educated myself on ADHD so that I can support, guide and help him through his daily struggles. It also allows me to understand his ADHD and how his brain works. 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. So I wrote a letter to my local MLA and also to the Ministry of Education. The reply from the Ministry of Education came 2½ months later and only after they had received a letter from my local MLA’s office on my behalf.

[1:50 p.m.]

The letter was from Patricia Kovacs, director of inclusive education branch. In it, she said: “Overall, school districts will receive approximately $1 billion this year to support students with special needs, and there’ll be more positions being created for special needs teachers, education assistants, counsellors and psychologists.” It also stated that the current funding model was introduced 16 years ago and that it was under review to improve supports for students with diverse learning needs. I am glad that they are getting rid of the funding model that was created 16 years ago, which excludes funding for children with ADHD.

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.

I hope you can change that. 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 dropout 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, a greater understanding of this neurological diagnosis and also have continuity between preschool years and school years.

My son was assigned an SCD, supported child development, worker from the Centre for Child Development. When he was in preschool, she would visit him once in a while, and there was a file open at the Centre for Child Development. But that information does not get transferred to schools, so there is this huge gap between preschool years and school years.

These are my suggestions on how we can include ADHD as special needs children.

N. Simons (Chair): Thank you, Shobna. Really appreciate your perspective. There is no intention on our part to exclude any neurodiverse condition. So we’re pleased to be able to….

S. Gounder: What are your intentions about ADHD children?

N. Simons (Chair): 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.

My first question was: when you said you wrote to the minister and you wrote to your MLA, did you ever attempt getting assistance from the Representative for Children and Youth’s office?

S. Gounder: They work where? Where do they work?

[1:55 p.m.]

N. Simons (Chair): The Representative for Children and Youth has offices in Burnaby, Victoria, Vancouver and Prince George. They are an independent office of the Legislature, so they don’t report to government. The representative is an independent watchdog, advocate for children. I always recommend people seek advocacy….

S. Gounder: I think I’ve kind of done that by writing a letter to the MLA and Ministry of Education. What we get…. I’ve met parents that have children….

N. Simons (Chair): Did you say that you think you did that?

S. Gounder: No. I did not do that.

N. Simons (Chair): Okay, I was just….

S. Gounder: My concern is that yes, we do that. ADHD parents do that. But the answer is: “No, there is no designation for ADHD.” That 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.” And the local schools? “No. Because ADHD is not a designation by the ministry, we can’t do anything.” There is this disconnect.

L. Throness: Certainly, as a committee, we’ve heard over the past month from parents of children with different neurodiverse conditions like ADHD but also FASD and a long list of others for which there are no specific supports. We appreciate you adding this.

I wanted to ask about the letter that you received from the Ministry of Education. Did it say that schools get $1 billion a year — $1 billion with a “b” — for special needs. I’ve never heard that. I’m wondering if you could supply a copy of that letter to the committee.

S. Gounder: I do have the letter with me. It said $1 billion to review the current funding model and make changes to it.

L. Throness: Okay. Maybe we could get a copy of that letter before you leave, even a photo of it. I would like to examine that letter. I think that’s an important thing, if we’re getting that much for special needs yet there are no special supports. We need to know that.

N. Simons (Chair): The committee would like that letter. Thank you.

S. Gounder: Sure.

N. Simons (Chair): Thank you very much for your time today and for your willingness to share your story.

I didn’t see any questions.

Do you have a question, Ronna-Rae?

R. Leonard: Yes.

Thank you for your presentation. I think what I’m seeing highlighted in your presentation…. There are some gaps in our ability, with our different systems, to be able to make people aware of what’s available. For instance, the advocacy of the Representative for Children and Youth, who is there to help you with your individual challenges with the system. Not to say that you shouldn’t be here at all. Absolutely, you should be.

I just wanted you to know that we are hearing similar challenges from different parents with children with different special needs. There is starting to be a theme that we’re hearing around — certainly not just starting, very significant — the whole educational system. The fact that your child was recognized for the challenges that he had at the beginning of his schooling is something that was quite new to me, to learn that that just comes up. We become aware of it and can start to deal with it.

We’ve heard from someone else that there was a designation within the school system for their ADHD child.

S. Gounder: 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.

R. Leonard: So your child receives absolutely no special…?

S. Gounder: Nothing. Even if you request it, there isn’t.

R. Leonard: Okay.

N. Simons (Chair): Thank you very much, again, for your presentation.

Next on our list is Laura Offley.

Laura, welcome to the committee and to the table. Thank you for coming. You have ten minutes, and I’ll give you a two-minute warning. Thank you. Take your time.

L. Offley: Thank you. I’ll do my best here.

N. Simons (Chair): Absolutely.

[2:00 p.m.]

LAURA OFFLEY

L. Offley: I am a parent in Surrey, and my children go to school in the Delta school district. I’m very lucky. I have two neurodiverse children, and today is my son’s 14th birthday.

Our son has been described as having a complex neuropsychiatric profile and many co-occurring conditions. He’s diagnosed with high-functioning autism spectrum disorder, also known as level 1; ADHD; anxiety disorder; developmental coordination disorder; social (pragmatic) language disorder; social emotional difficulties and sensory issues, including misophonia and interoception. He has a ministry designation of G for autism and is enrolled in the Grad Quest program in grade 8, leading to a Dogwood certificate in the Delta school district.

My daughter is 11 years old, and like her brother, she, too, is diagnosed with ADHD, anxiety disorder and developmental coordination disorder. When she was seven years old, she was assessed as having a learning disability for reading, but we’re pleased to report that she’s now exceeding expectations for reading at her grade level. She has a Ministry of Education designation of D for anxiety, and she also attends school in Delta and is in grade 5.

My experience with how my children were identified as neurodiverse came through the school system. My son was diagnosed with autism late, at age 11. While he showed interesting behaviours as a very young child and toddler, my husband and I were not concerned with his quirks. What we thought was unique and, honestly, rather intelligent behaviour we now know is typical for a young child with autism.

Specifically, he had intense interests, and lining up toys and objects would consume his time. We have photos of him at 19 months old, when he would spend hours elaborately lining up toys, but again, we had no idea what it meant. He appeared to be a normal child who did great in preschool.

Looking back, the first thought I had that something was very different with him wasn’t until he was five years old. On that day, I walked into his bedroom where he had been quiet, and he had every book he owned lined up on the floor, touching like tiles. You couldn’t even see the carpet. I thought to myself: “Normal kids don’t do this.”

It wasn’t until grade 1 that he started to struggle. He would lie down on the floor of the classroom to self-regulate and often choose the wrong tool from the toolbox to deal with the difficulties that he was having. Behaviour included cutting a girl’s pants with scissors because she told him she was too hot and she wanted to wear shorts — and urinating in the hallway, as the teachers wouldn’t excuse him to use the washroom when he needed. There were phone calls home daily that year — to the point that to this day, I still jump every time the phone rings during school hours.

One of the saddest days was when the school called and thought it best that he go home for the day. When I arrived, he was sitting in the office at a desk, and he had sticky notes attached all over his body. On each note was written the word “no.” It was the principal that suggested that he see a doctor to get his issues identified, and we had no idea that what the principal meant was mental health issues.

What followed were years of meetings, tests, assessments, diagnosing and a lot of discussion around what our son wasn’t, not what he was. It was years of advocating for him, pushing for him, being his champion, being the squeaky wheel that gets the grease and being “that parent” — years of working and struggling with school administrators, teachers, district and school psychologists, education assistants, learning assistance teachers, inclusion team members, family doctors, pediatricians, specialists, clinicians, therapists, psychologists, psychiatrists, researchers and, most recently, a behavioural consultant.

We even had to stop the process for a year. He came to me crying, with tears pouring down his face, proclaiming: “Mommy, I can’t talk to doctors anymore. I want to stop.” He opened my eyes to show me what I couldn’t see, which was that I was burning out too. Later, I knew I had to take assessments further when he told me that he was having dark thoughts, and he admitted those thoughts were of suicide. I was so proud that he was able to open up to me. It was then that we revisited his psychiatrist, who assured us that he was not suicidal but that he should be retested for autism.

[2:05 p.m.]

He was diagnosed with autism in October 2016 by a psychiatrist at B.C. Children’s Hospital. Currently, he is successfully managing grade 8. His academic scores are good and not a concern for us. His biggest challenges are executive dysfunction, such as keeping organized and handing homework in on time; interoception, fairly new, which is difficulties with emotional awareness; and misophonia, which is fear of certain sounds.

Interestingly, our daughter was diagnosed with developmental coordination disorder before our son. It was her kindergarten teacher that brought it to our attention that there were issues with her fine and gross motor skills. She was always a clumsy child, but I didn’t give it too much thought. For example, she would always fall backwards off benches at schools. Or, if there was a backpack on the floor, she would walk into it and trip and fall before her brain was even able to process that it was there.

While her struggles were not as great as her brother’s, her speech difficulties with lisping and mispronouncing words gave her a great deal of anxiety. Upon further assessment, she was diagnosed with ADHD by her pediatrician and then later diagnosed with anxiety disorder through child and youth mental health. She’s been part of research studies because of her developmental coordination disorder and has received therapy for it.

Both children have received cognitive behavioural therapy for anxiety, and both children have been able to regulate their ADHD through medication. However, my daughter is currently experiencing side effects of the medication that are increasing her anxiety, and she’s experiencing frequent bouts of depression, specifically at bedtime. I’m really tired. We’re currently awaiting services to assess her depressive moods. It’s hard for me to share more of my daughter’s story, as so much has occurred in the lives of my children that it’s so difficult to recall details. But if you’re interested in anything, I have lots of notes.

Our children are intelligent, interesting and imaginative human beings. We love them, and even with all of their difficulties, they are who they are, and we are proud of their neurodiversity and resiliency. I’d like it noted that the school system helped us a great deal. I have high praise for the school’s learning assistance centre’s teachers and my son’s psychiatrist.

I had to learn to navigate the system myself through investigative questioning and seeking out support and services. However, the greatest support that I’ve personally had is from other parents of neurodiverse children. I have learned more from their experiences, advice and wisdom than from any other source. It’s from them that I have learned that I am a very lucky parent.

While I am a strong advocate for my children, what makes me the most upset, what actually hurts my heart, are the children that fall through the cracks — those children that don’t receive a diagnosis or don’t have supportive parents, or where the parents, for whatever reason, are unable to speak for their children, nor be able to afford to pay for services, nor be able to participate in sessions like this.

I am here today to not only advocate for my own children but for those children whose parents cannot. We must not fail these vulnerable children nor their families. I’d like to make the following recommendations for you. 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.

Create full-time education assistants, at 35 hours a week, that are proven to work well with a child and are able to remain a constant in the child’s educational experience and not be bumped due to seniority. Provide up-to-date training and education for all levels of management and educators on inclusion and supports for neurodiverse students. Hire more school psychologists, district occupational therapists, speech pathologists and the like, and conduct more assessments. Many children who sorely need these professionals do not get access, as they’re not considered “bad enough” — mine included. Create properly equipped sensory rooms through allocated extra funding for each school budget that carries a directive for the administrators to implement.

[2:10 p.m.]

Ensure that class size and composition continues to take into consideration neurodiverse students and their needed environments, remembering that not all neurodiverse students are successful at full inclusion. Make assistive technology a priority and provide training, resources and funding for educators to implement it, and ensure that all secondary students with neurodiversity have access to all academic courses to ensure that they have the opportunity to graduate with a Dogwood certificate.

Thank you very much.

N. Simons (Chair): Well done. That was ten minutes and six seconds, so you have to shave six seconds off next time.

I really appreciate you sharing your insight. Thanks for putting so much thought into your presentation and into your recommendations too. I know that you brought up some things that I hadn’t heard, but we had heard the suggestion of a navigator. The wilderness that is the service delivery system can be intimidating and traumatizing, perhaps, even. So thank you for reiterating that, in particular.

L. Offley: It potentially could be a full-time job for me.

N. Simons (Chair): Just navigating…?

L. Offley: With the two, just navigating the system and coordinating all the appointments, all the doctors, waiting for all the referrals. Our health care system currently is failing me. My family doctor up and moved away to who knows where — just left his patients without a family doctor. The pediatrician has hospital hours and office hours, and he had to leave the country to go to India for a family emergency and is away for two months.

I went to child and youth mental health to get my daughter some help with her depressive thoughts. The wait-list is three months. They say: “We can’t refer back to Children’s Hospital until you get a referral through the pediatrician to see a psychiatrist.” I have three months of waiting before I can get her any help whatsoever, and she cries to sleep every night for two hours because she’s scared, she’s upset, and she doesn’t know why. I personally think it’s the medication. I can’t do a thing about it. I can take her off. She won’t be successful in school.

What do I do? I can try hunting down a new family doctor and play that role. Apparently, everyone’s going through the same boat. There are not enough health care professionals for the general public or in the school system for our kids, for my family.

N. Simons (Chair): I just want to thank you also for pointing out that you’re speaking for families that are not able to be here. We remember, but it’s good to be reminded. We recognize the challenge just to make time for this kind of thing. But at the same time, we’re looking at this issue because we recognize there are places where improvements are necessary. So we’re very grateful to you for the time you’ve spent with us.

L. Offley: Thank you.

N. Simons (Chair): Thank you for sharing your story. It’s generous of you.

All right, committee members and guests. We are now going to hear from Darcie Brown.

Darcie, welcome to the committee. Step up to the microphone. Do you know our timing situation and everything?

D. Brown: Ten minutes.

N. Simons (Chair): Ten minutes, and I’ll give you a two-minute warning.

D. Brown: Sounds good.

N. Simons (Chair): Okay. Thanks a lot. Go ahead. You have the floor.

DARCIE BROWN

D. Brown: Good afternoon. Thank you for the opportunity to speak to you. My name is Darcie. I’m the mother of three neurodiverse children— ages 16, 12 and seven — who identify as being twice-exceptional. They have areas of giftedness that are contrasted by areas of disability. I’m also completing my master’s in counselling psychology, and my thesis research area is parents of twice-exceptional children.

Twice-exceptional children’s giftedness may disguise their disability, or their disability may disguise their giftedness, while for others, the combination of giftedness and disability mask each other. In real life, twice-exceptional children and their families are often invisible, or even misidentified as having behavioural or emotional concerns, and are at risk of not receiving the support they need.

All three of my children are gifted and have their own unique challenges. For their formal diagnoses, my youngest has autism, the middle child has learning disabilities, and the oldest child has anxiety. The two youngest also were diagnosed with childhood apraxia of speech. The journey to arrive at getting assessments, diagnoses and treatments has been difficult and costly. Possibly the most valuable item in our home is their binder of assessments that holds over $10,000 of results in it.

[2:15 p.m.]

I’d like to share a little about our journey to give you a sense of what it can be like for families like mine. The process of getting my middle child’s diagnoses took about seven years. She did not learn to talk on her own, so we paid for two years of private speech-language therapy before she reached the top of the two-year wait-list to receive some speech services through public health. Thanks to this early therapy, by the time she went to kindergarten, she was able to speak clearly to her peers.

When she was in grade 1, I started advocating for her with her teachers that something wasn’t quite right. Reading was impossible, math was extremely difficult, and she was having violent meltdowns at home every day after school, despite being quiet and cooperative at school. What the school saw and what I saw were very different.

They informed me that they would never recommend her for psycho-educational assessment due to other children having more severe needs. So we had a private assessment done, which revealed that her abilities ranged from the 7th to the 99.5th percentiles and explained her frustration at being unable to do what she was capable of.

We paid for private vision therapy, and after a year of hard work, her area that measured in the 7th percentile was brought to over the 80th percentile. She’s had accommodations in school for her different learning disabilities and is a diligent student. She is now excelling academically and socially and is a model student who recently performed in a small play that her friends and she wrote, directed and starred in.

I believe that her early diagnosis that gave us understanding and timely therapies that brought about neurological change were essential for her to blossom into her potential. This most likely would not have happened if we had relied exclusively on public services.

My youngest child also did not start speaking on his own and had one year of private speech therapy when it was recommended that he have an autism assessment. Instead of possibly waiting months or even years on a wait-list, we opted to have a private assessment for him. The entire process, from being referred to receiving his autism funding and starting therapy, only took three months. He was 2½ when he was given his autism diagnosis and received three years of intense therapy in our home before he made a very smooth transition to kindergarten.

Thanks to his autism funding, I was able to create a team of people to support not only him but myself and the rest of our family as well. This was essential, as the daily demands of his therapy and his autistic behaviours were great. Currently, he is pulled out of his classroom once per week to receive extra teaching on social skills. I wish he received a little more support, but it is enough for now, as he is doing very well in school and in life. I believe his success is largely due to his early diagnosis and intervention.

My story is different than many other families, because I had the resources available to get assessments, diagnoses and therapies for my children in their early years. Three things have been significant for my children’s success: early diagnosis, funding and knowledge.

If I had waited for assessment through the public systems, my daughter possibly would never have been assessed, and my son could have been close to entering kindergarten before receiving his autism diagnosis. This means that families who are most vulnerable are, at best, receiving delayed services and, at worst, are not receiving the support and services they desperately need.

In addition, having an autism diagnosis has become the golden ticket of diagnoses. No other diagnoses have the same amounts of funding and support attached to them. While I appreciate what we have received through the autism funding, I believe that other neurodiverse children and their families are in need of the same kind of funding and support that children with autism receive.

Additionally, my training in the field of psychology has been a phenomenal asset in recognizing early that my children needed supports and in finding them and myself the support we needed. There is a lot of responsibility that parents of neurodiverse children carry, as they are not only dealing with the challenges of raising their children. They also have to advocate for them; help them navigate the education system; and, if they’re lucky and have the funds for it, put together, hire and manage their therapies. These increased parental demands must be balanced with increased parental resources and support.

In general, I have found that support in the early childhood years has been more available than when they enter school. The child development centre was key in providing me with information and referrals during my children’s infant and preschool years.

One exception to this experience of receiving less support for older children has been child and youth mental health. I recognize that mental health is not being addressed directly by this committee, but I wanted to speak to it briefly, as the challenges, differences and microtraumas that come with neurodiversity can easily lead to mental health issues.

When my eldest was in elementary school, I started advocating at his school that something was not quite right. It took over five years before we found the right diagnosis, treatments and programs for him. He is now able to attend school in the regular classroom with minimal support, through a program at his high school for adolescents with anxiety and/or depression. I found that the mental health services that my son and myself receive have been an essential part of the support system for our neurodiverse family.

[2:20 p.m.]

In conclusion, I’ve learned through my experiences that the assessment and diagnosis system can be difficult to navigate. There is a lot of responsibility placed on parents to become experts, managers, educators, financiers, therapists and many other roles, rather than just being parents.

The amount of emotional and respite support that parents carrying all of these additional burdens receive is negligible. I strongly believe that parents who carry the additional stress and responsibilities that accompany neurodiverse children need extra support to cope with the parental burden. I also believe that having a neurodiverse family is a beautiful thing and that it’s an opportunity for growth and richness for the entire family. However, if the family system is struggling with meeting basic needs, this development cannot happen.

Through my research, I hear stories of struggle and growth from other parents of twice-exceptional children. My research focuses on self-compassionate parents and how they use self-compassion as a resource in parenting. I believe that it’s necessary to not only provide timely assessment and support for children but also to give neurodiverse families practical and emotional support.

Thank you for taking the time to listen and engage with how to better support neurodiverse children and youth and their families.

N. Simons (Chair): Well, thank you very much. It was nice to hear the terminology you use, with “twice exceptional.” It’s the first time we’ve heard that as a committee, so we appreciate that. Thank you for your generosity with sharing your story.

I look to my committee colleagues for questions.

Interjection.

N. Simons (Chair): Yeah, you were very clear. It’s true.

When are you scheduled to…? I know this is a question every master’s student wants to hear. What’s your schedule for graduation?

D. Brown: I’ll cross the stage in November, but I’ll finish my thesis in a couple of weeks.

N. Simons (Chair): Congratulations.

D. Brown: I’m in the thick of it right now.

N. Simons (Chair): Yeah, no doubt. Well, thank you for taking the time to come, and maybe you’ll send a copy our way when you’re finished with your thesis.

D. Brown: The whole thesis? You have that much time to read?

N. Simons (Chair): I’m not saying we’re going to read every minute. Maybe we should just get a transcript of your defence.

Darcie, thank you very much.

We’re looking for Lori Bell and Meghna Haldar.

Welcome to the committee. We allocate ten minutes for the presentation and five minutes for questions. I’ll give you a two-minute warning in my most polite way possible. Thank you very much. You have the floor.

LORI BELL, MEGHNA HALDAR

M. Haldar: Good afternoon, and thank you for giving us an opportunity to share our experiences and thoughts with you. I’m Meghna Haldar, and this is my partner, Lori Bell. We are here with our son, Michael, who came home to us from foster care in 2016. He was four. Today we speak on behalf of all children in care and thousands of birth, kinship, foster and adoptive families in B.C., as well as on behalf of Amy Sangha, Michael’s birth mom, who died in 2017 at the age of 38. She is with us today.

Our oral presentation will consist of brief highlights of our proposal. We hope the committee will take the time to deliberate on our written presentation and give it serious consideration.

From four months of age, Michael went back and forth between foster care and his birth parent. At age four, when he came to us, he wore diapers, ate only bread and Nutella, couldn’t sleep and couldn’t soothe himself. In government care, he had four years of maladaptive chronic behaviours symptomatic of developmental trauma disorders. There was no sustained therapeutic intervention in our son’s case prior to his transition to permanency. Those are the first thousand days of life, when brain development is most rapid, that he will never regain.

Thereafter we encountered numerous systemic barriers to get the help we all needed. They included no standardized referral process or centralized coordination for therapeutic intervention, no pediatrician, wait-listed for a CDBC assessment for a further 18 months, a focus on attachment parenting but without locating it in a trauma-informed context, and a lack of trauma-informed therapists and practitioners. None of the documents submitted to this committee by MCFD, PHSA or Ministry of Education contains a trauma-informed lens or raises the critical question about the special needs of children in government care.

[2:25 p.m.]

Please ask yourselves why this population is missing from the big picture and what it reveals about their situation. It is why we are here: to propose a provincial trauma-informed integrated care pathway for our children and their caregivers.

Trauma-informed and integrated care for this population is a vital shift in paradigm for special needs services in B.C. Our suggestions stem from a collaborative community effort in finding solutions to a seemingly intractable problem. It is foregrounded in the research on the impact of early adverse childhood experiences.

L. Bell: According to the American Academy of Pediatrics, an increasing body of evidence points to the ability of early life experience to trigger epigenetic modifications, effectively altering brain structure by changing gene transcription. The groundbreaking CDC adverse childhood experiences — also known as ACEs — study found that the more negative events a child experienced, the higher the likelihood of an array of health and behaviour problems in adulthood, including chronic pulmonary disease, substance abuse, adolescent pregnancy and reduced life expectancy by as much as 20 years.

Given the evidence on the long-term impacts of ACEs on children, waiting for other criteria and/or concurrent diagnosis to receive appropriate supports is devastating for our families. Presently, the median age for an FASD diagnosis is eight years, which is already too late for the thousands of children who have spent their early years in government care.

A standardized care pathway for B.C. kids using ACEs criteria would ensure that children in government care are identified early and protective measures put in place to support them and their families while they await further assessment and diagnosis.

We’ve submitted a draft ACEs pathway, adapted from said committee meeting documents. We suggest the pathway include these five elements.

An ACEs framework. Investigation by a protection social worker should trigger identification of risk using ACEs criteria and prompt immediate referral for complex developmental and behavioural conditions, CDBC, assessments. Given the difficulty of obtaining a clear diagnosis early, our care pathway should not depend on an FASD NDD diagnosis to establish need for family intervention, support and respite.

An expanded key worker or navigator program. A pathway should build on the existing key worker program. Referral to a key worker should be initiated as a result of any investigation by a protection social worker. Presently, the key worker is there for education and training about FASD CDBC, but it does not necessarily guide families to other services. Provincial key worker and infant development program services — foundational services — need to be standardized and trauma-informed.

We learned about the key worker program from a friend, not from the ministry.

Trauma-informed early intervention, parenting and respite services. For at-risk children identified by MCFD, the importance of an organizational and political context committed to trauma-informed practice is critical. A trauma-informed care pathway would seek to provide early intervention services to children and families, address the trauma history of parents who are in crisis and provide respite support for all families. It also means that caregivers get trauma-informed training and coaching, regardless of the community that the child lives in.

Research on all these fronts has shown that investment in support of families pays dividends by keeping families together. Isn’t that the whole purpose of MCFD?

Wraparound services and secure care to prevent disruption of adoption. Permanency is not a magic solution. In the last few years, multiple friends have experienced adoption disruptions with their teenage children. Crisis intervention and wraparound support needs to be part of the continuum of care and has to be coordinated by the navigator — family key worker — with a multidisciplinary team.

Finally, fifth, paradigm shift to a trauma-informed system. We recognize that we are calling for a vital shift of paradigm to a trauma-informed service system. It is neither new nor radical. According to the U.S. Department of Health and Human Services in 2013, trauma-informed service improvements in child welfare may produce better overall health outcomes, like fewer children requiring crisis services — such as emergency department visits or residential treatment — and fewer foster home placements, disruptions and re-entries, with overall improved child functioning and increased well-being.

M. Haldar: Now, you might be wondering: why the need for a trauma-informed pathway? The reasons for a trauma-informed pathway are clear to us. There is a moral impera­tive.

[2:30 p.m.]

These children and youth, largely from Indigenous and impoverished backgrounds, were or are wards of the state. Being marginalized on multiple fronts, sometimes for generations, their parents and caregivers cannot always advocate or self-refer for supports and services. Their lives were permanently altered by one fact, and that is that the province of B.C. became their legal guardian. This places an immense responsibility on you and on the state to provide them the care you would wish for your own children.

Two, legal duty to accommodate. We believe that under human rights law, service providers like MCFD have a duty to accommodate our children, with their trauma disorders and stressor disabilities to the point of undue hardship. Their services must be available to our families in an accessible way.

Three, there is a health burden. A population-based study in the Netherlands on the impact of childhood adversities on adults found that the burden of disease associated with ACEs was greater than all other common psychiatric disorders, as well as having the greatest impact on later disability. For every ACE, the risk of suicide increases up to fivefold, as does the risk of alcohol abuse or drug addiction. When it comes to our children, when it comes to him, that is an unacceptable risk.

Economic burden, or the penny-wise, pound-foolish syndrome. Failure to intervene effectively and provide early childhood supports creates a long-term economic burden on our communities. There are direct health care, law enforcement, long-term housing, mental health and addiction costs, as well as special education, supportive housing and indirect costs like the long-term loss of productivity due to disability or premature mortality.

There are other cost components that are more intangible, like the loss of productivity caused by grief and loss of caregivers and family members, which are just plain immeasurable.

This has been a collaborative effort that has come out of inclusive conversations within our community. VACFASS, and they are here; Shared Care, an initiative of Doctors of B.C.; Adoptive Families Association of B.C.; Pediatric B.C.; Parent Support Society of B.C., which is a kinship organization; Inclusion B.C.; public health researchers; key worker agencies like Kinsight, also seated here; and numerous families, also seated here, have been part of this journey. Some of you have heard from our friends, family and neighbours. As well, our friends from all walks of life, across B.C., have written and accosted you on our collective behalf. We are not alone.

Of B.C.’s kids in care, 936 died or received critical injuries last year. A single child is one child too many. To us, it is clear that to serve our at-risk children and families, there needs to be a shift in the service paradigm to one that is trauma-informed and guided by reconciliation, support and healing.

The time is finally here to stop the cycle of trauma. The time is now. If not now, then when, and if not us, then who? Thank you.

N. Simons (Chair): Nice. Thank you very much. No one’s accosted us. I’ll tell you that. Absolutely nobody has accosted us, because they know that our goal is to seek information and experiences that will improve this system. That is why we chose this subject. As a committee, we deliberated over it.

I’m so grateful for parents like you and others who have been generous with their stories, because it’s impactful to all of us. We’ve heard from over 125 people — parents, caregivers, support organizations. It’s not a burden for us to listen to those stories. It’s helpful to us. That’s why we’re on this committee. That’s why we’re consulting with people.

L. Bell: Thank you for listening.

L. Throness: Just a few short questions. Everything came very quickly. Could you just talk a bit more about what the ACEs framework is. What does ACEs stand for?

L. Bell: ACEs is the adverse childhood experiences study. It was a CDC–Kaiser Permanente study. We’ve referenced it in our document, as well, and we’re happy to provide any other information that would help.

L. Throness: Are you saying, then, that trauma is a foundational condition that is foundational to things like ADHD?

L. Bell: Yes.

L. Throness: That it’s actually the cause of those things?

L. Bell: There’s a connection. There’s definitely a correlation. That trauma exposure seems to be a common history. If you look at other situations — later disruptions and breakdowns in adoption, for example — that’s always the history: the trauma exposure.

M. Haldar: Excuse me. Even if it isn’t, isn’t it enough that these children have been taken away from their primary caregivers?

[2:35 p.m.]

That trauma itself never seems to be making it into any of these special needs cases that are presented. It’s not in any MCFD presentation to you on special needs. I know that the RCY’s office talked about a family that lost a child who was 15 years old. The history of that is the family couldn’t access a single special needs service because of her diagnosis.

L. Bell: Her multiple diagnoses. But they didn’t fit under autism, intellectual disability or FASD.

L. Throness: You have concentrated your presentation on children in care. There are about 6,600 children in care, but there are, of course, hundreds of thousands of children in B.C. So why did you just concentrate on children in care? Is it because they are all affected by trauma? Is that what you’re saying?

M. Haldar: Through this journey, we’ve been contacted by people who have adopted privately and also people who have children who have FASD. I think one of the reasons that we were proposing this for kids in care is it’s a small population. The state is the guardian of these children, and honestly, if you can’t do your best and you can’t provide a pathway of care to the children who are your children, then I don’t know that the state can do a very good job with anybody else.

N. Simons (Chair): Let me just correct you: our children, the state, we, the province — not the government, not the Legislature — the people of B.C.

M. Haldar: The people of B.C.

N. Simons (Chair): Yes. I think we need to remind ourselves of that.

M. Haldar: They are my children.

N. Simons (Chair): Exactly. Yes.

M. Haldar: I have adopted one legally, so they are my children. But they’re also your children. They’re this government’s children, right?

N. Simons (Chair): Yes, I’m just, for the purpose….

M. Haldar: Thank you so much.

N. Simons (Chair): For the people to understand that we, collectively, as a province, have a responsibility….

M. Haldar: Yes, but for B.C. kids in care, I think that’s where it begins. I think there are other kids who…. I think if a pathway works, it’s great. But I think this population also has…. The caregivers are not always the best advocates. They can’t go out and access help. They can’t self-refer. So if they can’t do it, then who does it for them?

N. Simons (Chair): Absolutely. As a former worker on First Nations territory for many, many years, I recognize that we overlook sometimes the idea of that trauma and the intergenerational trauma that exists. I think you’re attention to that in your presentation was particularly helpful, in an overall very helpful presentation. So thank you very much for your time today.

L. Bell: Thank you very much for listening. We appreciate your attention.

M. Haldar: We’ll still have people in your constituencies come up to you and talk to you about this. We’re not giving up.

N. Simons (Chair): Just for the record, as MLAs, we welcome people coming to us and telling us their stories. It informs our deliberation.

Ronna-Rae has a last minute….

R. Leonard: Yes. Just to let you know, I have had two doctors come and present to me in my office. I wasn’t at home when they presented a film on the subject, and the community came out. So the word is getting out for sure.

M. Haldar: Hooray for us. Thank you so much.

N. Simons (Chair): Thank you very much. We’ll take a three-minute recess.

The committee recessed from 2:38 p.m. to 2:45 p.m.

[N. Simons in the chair.]

N. Simons (Chair): Thank you very much, guests and committee members.

I would like to now call on Catherine Adlam, please, to present to our committee.

Welcome to you. Thank you for being here. As you may have noticed, we have the ten minutes and all that kind of thing. You have the floor.

CATHERINE ADLAM

C. Adlam: Thank you for having me. My name is Catherine Adlam. I am the proud grandmother of three special needs children, one of whom I have in my care through the ministry. I’m here to speak about the poor access to things for the children with neurodevelopmental disorders and how they are treated by government officials.

I myself have three grandchildren who suffer from one disorder or another. I have custody of my five-year-old grandson, who has a neurodevelopmental disorder and fetal substance abuse disorder. He was on the wait-list for assessments, and I forced the social workers to actually get him rushed through, because school was starting and I didn’t want him to be a failure there. To have to wait a year or more because you cannot afford to pay for this service is abominable. These are little children’s lives we’re talking about. We’re not talking about a piece of furniture; we’re talking about a life.

My grandson’s assessment was incomplete. We do not have a psychoeducational evaluation. We do not have an autism designation. So thereby, I’m not eligible for respite, because we don’t have these. I’m not eligible for extra help for him, because I don’t have these. I’ve asked the social worker, and she said: “Oh well, they said that it’s in the report.” I’ve had another social worker look at it, and they said: “No, it’s not in the report.” So I’m fighting a constant uphill battle.

My granddaughter didn’t get hers done till she was in grade 3. That was only after the school had said that the mother needs to go for parenting classes. When she finally got her diagnosis, they found out that she had some trauma. Both of her parents have neurodevelopmental disorders, and subsequently, she does as well.

Talking to doctors, it seems that doctors don’t want to hear. My family doctor said: “Well, we could give him a drug.” Why do we need to drug our children? Just get them assessed and find out what we can do for them. There are other things besides drugs that we don’t know the long-term effects of down the road. I’ve chosen not to drug my grandson.

I have worked out an iron-and-vitamin regimen, along with calming herbs, which works, provided he gets it every day. His father has weekend visits but doesn’t make sure he gets it. Coming home, he’s combative, he’s defiant, he’s screaming and yelling, and he will not go to bed until midnight. Subsequently, this carries through to the next day, which is Monday — school. He doesn’t go to school, because I don’t want to set him up to fail. By sending him to school, he would lose time, and that would set his mind to saying: “I’m no good. I’m not doing that.”

I wish more parents would see that if the child is having a hard day, don’t send them. Don’t send them, please, because it only registers to them, when they’re sent out of the class or disciplined, that they’re failures. That’s hard on the child.

I have a third…. My grandson, who’s ten now, was diagnosed, when he was a year and a half, as having Koolen–de Vries syndrome. He’s non-verbal, autistic and has major difficulties. His mother still hasn’t been able to find her way through the system. Whatever she’s told, there are no set guidelines for anybody who has a child with neurodevelopmental problems to follow. We don’t know where to go.

[2:50 p.m.]

It was only by fluke that I got a care worker through Fraser Valley Child Development Centre. My grandson is with Mission Mental Health.

I have another behavioural therapist. He’s in riding therapy. All of these things I had to go in search of to help him. There’s nobody telling us or saying…. What angers me is that his doctors, when he was born, knew that he had issues but never followed through on it. So we have the pediatrician knowing that he has problems because he’s detoxing from drugs, but not following through as he gets older to get him the help that he needs. Again, he falls through the cracks.

I find it very disconcerting. It’s hard dealing with the ministry. The ministry’s mandate is to return the child to the parents. Mom is still using drugs; father mentally abuses the child. Case in point, this weekend, he had a little mark of chocolate milk on his shirt. His father stood in front of him and told him he couldn’t be seen walking down the street with him like that, put on his jacket, zipped it up and said: “There. Now you’re presentable.” What is that message being sent to the child? “You’re not good enough.” I relay it to a social worker — nothing happens. It’s falling on deaf ears.

We are at the point right now where we’re trying to take parental rights away from the parents. The father is fighting it because he says he wants him. But he doesn’t want him full-time. He put that in a letter. He only wants him 40 percent of the time. Again, what does that say to the child? “Oh, you’re only good enough to be with me a couple of days.”

These are children whose minds are very smart, but they don’t know how to get the message from here to here, or here to here. They struggle, and that comes out in their academics. It comes out in their behaviour. It comes out in their presentation to the public. It used to be that these kids were left at home. The parents wouldn’t take them out. The parents would hide them. Now we want them included. We need them included because they are an actual part of life. They’re not something to hide. They deserve everything they can get.

There isn’t a school or park that I have seen that has any kind of play area or playthings for these children. Some of them can’t climb those slides. Some of them can’t sit on those swings. They see all the rest of the kids having fun, and they can’t have fun because they can’t do it. That sets them up again for feeling like they can’t be included. It just keeps going. I mean, it’s not that hard to put proper playgrounds up. It’s not that hard for the schools to turn around.

I have a wonderful school. The teachers advocate all the time. The teacher advocates, and the principal. Everybody has come together to do everything to make Colby a success. To me, that’s wonderful. If he moves to New Westminster, that won’t happen. He will become a statistic and be left to fall by the wayside.

I’ve deviated from what I wrote. I feel that all governments and all people, whether they’re part of the child’s life or just here — parents, everybody — all need to turn around and realize that these children, particularly the ones with neurodevelopmental disorders, special needs, anything like that, all deserve to be treated as equals. They deserve everything they can get in life. It’s going to be harder for them to achieve it, but they deserve it.

Their school says: “We have a set mandate: the kids go to school from this age to this age.” These children aren’t going to make it through school from this age to this age. We need to be able to allow them to be there till age 21 if that’s what it’s going to take for them to try and get their Dogwood diploma. My granddaughter — we’ve been told she’s only getting a leaving certificate; she’s not even getting an Evergreen diploma. In middle school, she lost most of her help, so she’s there struggling through middle school on her own, and she can’t do it.

[2:55 p.m.]

We need more aides. We need more people that are going to come together and facilitate the parents to help them down the road, to open people eyes to the fact that there’s more help needed. You guys are here speaking on behalf of the children. I’m very thankful you are, but more needs to be done. Social workers need to wake up. They do need to wake up. They need to go take a course on cognitive behaviour to understand what these children are going through and not just say: “Oh well, we’re here for family reunification.”

Some parents can’t be parents. If they can’t be parents, don’t place that child at risk because you want family reunification. If one cog in the wheel doesn’t move, then we all stand still and nothing gets done. We have to keep the wheel moving so that we can get more for these children.

N. Simons (Chair): Thank you, Catherine. Thank you very much for taking the time to talk to us about your situation. It’s all very helpful. It’s all going to help as we deliberate on how things can possibly be made slightly better.

My question off the bat is: why would the ministry require a designation of anything in order to get respite?

C. Adlam: The children have to have an autism…. There’s a spectrum. The children have to fall somewhere below a certain number before you get respite. Other than that, you don’t get it. It’s not paid for.

N. Simons (Chair): I’m presuming that the middle one, the five-year-old, is under the ministry.

C. Adlam: Yes.

N. Simons (Chair): I don’t see anything in policy that would prevent respite to be provided to you.

C. Adlam: I was advised by the team leader and the social worker involved that I was not entitled to respite because, first, he was in the extended family care plan. But I go through reading things, and it says: “Yes, it is.” Then we put him in my temporary custody. They still say: “No, it’s not available.”

Now Dad gets him on the weekend. His dad never took him more than once every two weeks, if that — sometimes not even for a month. Now his dad is seeing him every weekend, so every Monday, he’s not in school. It’s unfair to the child. He doesn’t want to go to his dad’s. I have to force him to go to his dad’s, because it’s mandated by the social worker. I try to explain to the social worker he doesn’t want to go. Well, he’s got to go.

They fail to realize we’re dealing with a special needs child. This isn’t a normal child where you can just sit there and say, “Oh, it’s okay; this is what needs to be done,” or explain it. He doesn’t understand it, so he gets angry, because he’s not being heard now. I’m only one voice. I’m the only voice he has, because he can’t speak up for himself, and nobody’s listening.

N. Simons (Chair): Okay. Well, I thank you again for taking the time to be here. I hope that there’s something in our report that resonates with your suggestions.

C. Adlam: I’m praying. I don’t know if you guys have gone to the playgrounds that we have or anything. These children just sit back and are left out, because they can’t do anything. That’s heartbreaking for me — to see these children wanting to get in there and play with their friends. But they can’t, because the equipment is not there for them.

N. Simons (Chair): Thanks for pointing that out.

I’d like to welcome to the committee Tina Patterson.

Tina, welcome. You have ten minutes, and I’ll give you a two-minute warning. And I’ll try to be polite. Go ahead.

TINA PATTERSON

T. Patterson: In Shakespeare’s Romeo and Juliet, an important question is posed: “What’s in a name?” In the case of neurodiversity, much, as the concept is very much a paradigm shift in how we view children with special needs. Instead of seeing deficits, like we did in the past, today the focus is on, as Shelley Moore would say, strength-based competencies. This term of neurodiversity is a positive construct as we navigate supporting children with special needs. It is a great step forward. Yet this paradigm shift is not fully normalized in society. So there’s still much work to be done.

[3:00 p.m.]

Thank you very much for hearing from me today. As you know, my name is Tina Patterson. I will present my lens as a parent of two children, each with their own version of neurodiversity, as a practising teacher of 19 years and as a DPAC representative.

I have two boys, 12 and 14, both similar yet different, as siblings often are. My youngest is gifted, and while many people see this label as a badge of honour, if one truly understood the complexities of giftedness, they would change their perspective about this badge of honour. If one was aware that the cognitive, creative, affective and behavioural traits of a gifted child can mirror the similar complexities of other neurodiversity disabilities, such as those on the autism spectrum, our structures of diagnosis and implementing support strategies would be more accessible for these individuals who do have special needs but are often ignored and go without support.

Being a parent of a child who thinks in complex concepts can be really exhausting. It also means that school engagement is a challenging attainment, for instead of being engaged, our gifted individuals are often in-house tutors or left to self-directed instruction. Of course, there are some great practices. However, the inconsistencies far outweigh these great practices.

I should clarify with you. My son is gifted, but he does not have a gifted designation. This is because of varied assessment practices within our province, resulting in inconsistent application of criteria from jurisdiction to jurisdiction. Added to the complexity is that his district has had an actual ban on labelling gifted children, despite the fact that giftedness is in our special ed policy manual and also referenced in our School Act. This ban was finally lifted this February. However, he is now in grade 7, so it seems the burden of assessment will be placed on the high school system.

My son is one of the lucky ones. He has a supportive school team, and I have the skills to advocate for the strategies that support his learning needs. However, this system of the squeaky wheel gets the grease, or being in the know, lays the foundation for an inequitable system.

Also, note that this practice of deferral is a theme that is echoed both in our medical and educational settings, as it pertains to assessment practices for neurodiverse individuals. One action is to provide a clear flow chart of roles and responsibilities for diagnostic processes and implementation of supports within our stakeholders, for it seems that they’re always constantly pulling and not working together as a round cog.

I want to shift now to my eldest son, a clever, creative boy who also happens to have autism spectrum disorder. To say that the assessment process and the implementation of support services was hell is an understatement. We faced an uphill battle that no family should have to face when trying to support one’s child. Thankfully, we had the education, financial resources and moxie to advocate for our son. Sadly, this is not the case for all children in B.C.

When I reflect on time wasted because doctors did not listen to me when I said that I knew there was something unique about my son and his development, I still feel a sense of anger. Imagine: if an educator is not listened to in regard to concern about their child’s developments, how does a single parent with little education get heard? How about the person who speaks little English?

[3:05 p.m.]

Why is it every doctor, early childhood educator, K-to-12 educator, public nurse and other professional working with young children and school-aged children is not re­quired to have the understanding and training in terms of the signs and assessment practices? This is a flaw in our system.

Accessibility. The screening and assessment forms are generally only available in English and full of jargon, making questionnaires challenging even for English-speaking individuals. Families cite this as a major stressor. The stakes feel so high, as assessment is perceived as the pathway to receiving supports for their child. Making screening tools and assessment forms in varied languages would be one strategy. However, these tools must be accessible for practitioners. Otherwise, they will be deemed useless and not used for the children who need them.

Wait times. As parents are shuffled from appointment to specialist to intake meetings just to get an assessment — often a three- to six-month process just to actually get to the assessment meeting — it can take anywhere from six months to multiple years to finally get that designation and that report the other lady was speaking of.

It is also important to note that parents are left to their own devices during this wait time. The process of survival and endurance, as parents juggle commitments striving to support their child, is in fact a burden that is not equally distributed within our system.

One strategy may be to consider utilizing public health nurse practitioners, who see children already for booster shots and such, or training our early childhood educators that are working with our children in terms of assessment practices. In terms of accessibility, we also must consider our northern B.C., central B.C. and Vancouver Island families. It is a barrier for families to have to travel for assessments, and though some people are able to be referred locally, it’s not the case for everyone. Not every service provider who works with children under six, or even school-age educators, are trained to understand the complexities of special needs.

In reflecting on my experience as a parent of a child with neurodiverse special needs, it was the transition from preschool to elementary school that was certainly the hardest. It also resulted in PTSD for both my son and myself. Though the school had my son’s assessment, the process to get supports in place was challenging. This was partially because the teacher did not agree with the reports but also because of a shortage of psychologists in order to review his file and get the paperwork started.

Currently there is a discrepancy between practice and policy. If the special education service manual is a guideline for referral of service, we are getting a failing grade. Wait-lists for both assessments and implementation of services mean that students may never actually receive support in their entire K-to-12 experience. Supports like speech therapy, OT/PT, and so forth, are either non-existent or rather minimally provided in the school system. This contradicts both the School Act and the explanation of why service funding such as autism funding or at-home programs goes down when students enter into school. Parents are told that these services will be provided in elementary schools.

How can we improve? One, we have a shortage of service providers, yet spots in university do not increase to recognize this shortage. Why isn’t there a similar program to the trades industry — academic incentives for training to go into these professions?

Second, if we cannot fill this role, we should be training our SEAs to implement and monitor programs developed by consultants. Not providing services is a disservice.

Finally, improvement in training for trauma-informed practice — this is something you’ve heard already — when working with parents would in fact defuse much frustration. We’re dealing with people who are experiencing significant stress. Instead of supporting parents, they are often viewed as the enemy. This is a practice that is hurtful and counterproductive.

[3:10 p.m.]

Section 177 of the School Act’s ban is often utilized as a weapon by outlying parents emotional from the challenges. Similarly, tools — and I do restate that, tools — such as safety plans should be used to help students but are being used as weapons, enabling expulsion or unacceptable practices such as sending children home early, arbitrarily reduced school access. This must stop.

In conclusion, I do have to say that my children, once removed from their first, very toxic environment, where my son was actually put in isolation — that, therefore, is where the PTSD came from — did actually experience excellent inclusion practices. There are models out there that do work. We have to put in the time, resources and the education.

N. Simons (Chair): Thank you very much, Tina. You didn’t go too far over time. You were succinct. Appreciate your input. I like how you started: what’s in a name? We’ve talked a lot about diagnosis, not diagnosis, and, really, what it all means.

Laurie, do you have a question?

L. Throness: I’m a little slow, so I didn’t quite get your introduction about the paradigm shift that’s needed. Could you just describe that again — what kind of paradigm shift the system needs?

T. Patterson: We are starting to see much more inclusion where students with neurodiverse needs are in a classroom. But there still is a paradigm shift required, where we have people that want to separate kids. We do not want to have IEPs where we’re having — and I’m not saying this for my own; I’m saying this as a parent — and where we want to follow up and actually be implementing these strategies, because these strategies often are work, and there’s not the support to actually implement these things properly.

L. Throness: So the paradigm we need to change is…?

T. Patterson: Both attitudes around the fact that these tools, in fact, help support students, help support families, educators, but the shift needs to occur that these practices actually have to be consistently done and not brushed off.

Instead of actually implementing the supports, we’re sending our children home. We have children that are missing two, three, six weeks of school because these things aren’t implemented properly.

N. Simons (Chair): Thanks, Tina. Well done.

Now we have Jennifer Newby.

Jennifer, welcome. Thanks for coming. You have hand­outs.

J. Newby: Yes, I do.

N. Simons (Chair): Okay. Well, go ahead. You have ten minutes. I’ll give you a two-minute warning.

JENNIFER NEWBY

J. Newby: Hello, everybody. My name is Jennifer Newby, and I am the mother of two amazing little wild men, Brian and David, both of whom you’ve just seen being taken out of this room. They’re here with me today, obviously, if you want to take a chance to say hi.

Public speaking does not come naturally to me, but I made a point of signing up today because I feel like I have a unique perspective to offer you. Brian was assessed at age three in California, and David is currently undergoing the assessment process here in B.C.

First, I’m going to tell you about our journey with Brian. There is a non-profit in California called the Regional Center. There are a lot of parallels between the Regional Center there and the Centre for Child Development here.

We got referred to them by our pediatrician, and within two months, they sent a speech-language pathologist to my home for a preliminary assessment for Brian. He had about 50 words at that point, but none of it was functional language. For example, he could label things like blue car, but he couldn’t tell me if he was hungry or tired or thirsty — anything.

Between the ages of two and three, they provided Brian with weekly speech sessions, a full occupational therapy assessment and an ABA program in our home. We had a case worker there who would check in with me regularly, but most of the actual session work was contracted out by them to private clinics, locally.

I want to reiterate that he had not been assessed at that time. They just saw the developmental delays and stepped in to fill that need. One of the biggest differences I see between the Regional Center and the Centre for Child Development is that the Regional Center would reclaim that person’s file once they’d reached adulthood and help facilitate the services into adulthood from there.

Once Brian reached his third birthday, he was considered aged out of the Regional Center, and he transitioned to the local school district. Again, any assessment was not required for the registration there. There was a specific school facility for children below kindergarten age that I genuinely cannot say enough good things about.

[3:15 p.m.]

It was an intensive behaviour intervention, or IBI, preschool, which is ABA therapy in an intensive, 25 hours or more per-week setting. For him, it was a full school day from 8:30 to 1:30, with one EA for every two or three students, depending on the need, and a full-time OT and speech therapist on site.

The facility was completely gated, and they did an extended school year to prevent regression over the summer break. The IEP was legally binding and, for us, had 14 or 15 ABA programs in process for him at all times. They worked on everything, from receptive and expressive language to texture versions in OT to reciprocal play.

My number one suggestion for this panel would be to drastically increase the funding for the Centre for Child Development and then further expand upon it so that they can replicate this facility all the way across the province. We know early intervention is critical. We know the number of children needing support has only gone up. We know from our Supreme Court Auton decision that ABA is the gold standard for autism treatment. We know from the Moore decision that needed accommodations are indispensable. We really need to put actions to these words and invest in the people and the tools to support our kids.

It was at that school that Brian finally found his voice and really started speaking. He attended there for 20 consecutive months before we decided to move to Canada. My family is scattered around the States, and my husband’s is all centralized here, locally. With an autistic toddler and a newborn, I realized I was going to need a lot more help.

Once we got here, I was told that a confirmation of diag­nosis could be filled out by a doctor but wasn’t likely because they don’t even accept diagnoses from other prov­inces. I was told I should just pay privately for a new assessment and call it a day. Let me ask you: who has $2,000 or $3,000 to fork over like that, especially right after moving? It took me almost ten months, a lot of phone calls and lost sleep, but I finally convinced someone at Sunny Hill to allow our pediatrician to sign off for us, based on the mountains of paperwork I had accumulated in California.

That is my second suggestion. We have a list here of reciprocal countries where we can accept driver’s licences for them for transfer. Why can we not do the same with medical documents, and why are we second-guessing other Canadian doctors across the country?

During those ten months, Brian received no support of any kind. He was still in the age bracket where the Centre for Child Development could have accepted him. I just didn’t know they existed.

Then we get to kindergarten. Before I dive into the timeline of events, I want to talk money here for a minute. The autism funding unit was the result of the Auton litigation. Its intention was to pay for medically necessary ABA treatment. We all know that when they turn six, the funding drops from $22,000 to $6,000. The justification for this is that the money is being diverted to support the kids in school.

But many parents in our community are told the funding doesn’t belong to their child. Many of the kids get shared EAs or no targeted therapies in school at all, of any kind. A case in point: three years in a row on Brian’s IEP here, they recommended him for another speech assessment. Never happened in three consecutive years, in writing, on his IEP.

Further to that point, though, the dollar amount for the autism funding unit was never tied to inflation, so the actual purchasing power has only gone down over the last 15 or so years. Why is this allowed? Why was this never, at minimum, tied to inflation?

That is my third suggestion. If the autism funding can’t be moved under the Ministry of Health, where it actually belongs, it needs to be drastically increased and then tied to inflation.

Back to kindergarten. The school-based team agreed to provide him with a one-on-one worker. I later found out that the education assistants here have no regulatory body or standardized training. That is, fortunately, in the works now, but we are talking about incredibly vulnerable children being left in the care of someone without comprehensive training.

Needless to say, kindergarten and grade 1 were an utter disaster for him. They knew going in that he was a bolter. But the very first EA they assigned to him could not run, so she taped pictures of stop signs on every door of the school. Let’s just say that didn’t work. The second one left him in urine-soaked clothing for 30 minutes and then glared daggers at me the entire rest of the year because I would not let her near my child again.

The third one seemed all right, but she wasn’t able to tell me anything. I always thought I just caught her rushing out the door to pick up her own children from school. I came to find out that the person who spends the most time with my child isn’t allowed to speak to me because she’s supervised by the classroom teacher, who doesn’t necessarily have the time to speak to me. Do you begin to see the recipe for disaster brewing here?

The fourth one was a glorified babysitter. She kept telling me: “Oh, he’ll figure it out.” The fifth one was the only one I felt like had a good connection with him. But because she was switched in towards the end of the school year, she didn’t ever achieve instructional control.

[3:20 p.m.]

All five of these EAs happened to my child during the span of kindergarten and grade 1. In that time, my son’s behaviour escalated. We had aggressive incidents in school. We had bolting from and hiding on the school grounds. He was reduced to half days for most of kindergarten, and then we instituted a safety plan in grade 1, after he injured his classroom teacher and bit another teacher on the grounds.

The principal at that time made me feel like I should be grateful he was there at all. Any time I advocated, I got eye-rolls and sighs. “That’s just not the way this works.” This situation with multiple EAs and changeover like this is, unfortunately, very common.

I want to point out the jarring difference in IEPs as well. Our kindergarten IEP here was three goals long: stop and come here on command, asking for breaks, hands to self. They’re all useful goals, sure, but it just feels so limited in comparison to what I know he’s capable of doing.

Fortunately for me, in grade 2 we got an amazing EA. This is not coincidence. Our fifth one begged her to take the posting with my child because she didn’t have the seniority herself to get him back. This young woman walked up to me on the very first day of grade 2 and said: “You must be Jennifer and Brian. I am so excited to meet you. I’ve been hearing about you guys all summer.” She already knew his preferences. She already knew his main triggers. The EAs had compared notes. We also got a new principal, who is also wonderful.

Grade 2 went very well. I requested to keep the same EA for grade 3, which is now commonly referred to as a continuity request, and I was told no. Myself and about 30 other parents got the same form letter, which is included in your handouts, that ultimately said: “We’re putting the union’s right to seniority ahead of your child’s right to an education.” We could not accept this answer, so we advocated. The end result is that our superintendent granted the request for the dozen or so of us that were the loudest after I filed a human rights complaint. Our mediation is set for July 9 this year.

I brought with me to show you…. It’s my copy; I’m not leaving it with you. But my son is now in the grade 5 textbook titled Inquiring Minds: Canadian Issues and Governance. This book just started printing this last January. Our section of it is based on a media article directly related to this whole continuity fight, and his picture is on the page talking about the UN convention on the rights of the child, which is page 166.

In the meantime, we’re in the process of doing this all again for the upcoming school year. I want to reiterate here that everyone who knows my son directly is supportive of her staying, and this worker wants to stay with him. You would think that between the human rights code and the Hewko decision, I would not have to fight this hard, but here we are.

I can name a dozen people I’ve met in the last couple of years alone who have had to file complaints with the Human Rights Tribunal, teacher regulation branch, Ombudsman. I can name another half-dozen, one of whom was here earlier today, who’ve had the ministry called on them in a retalia­tory manner in the last two years after issues with the school-based teams.

I’ve tried talking to my local MLA, Bruce Ralston. It took about five months to get an appointment and the intervention of a Liberal MLA critic to schedule that meeting, and then he genuinely could not get me out of his office fast enough. I didn’t expect him to talk to me about the Human Rights Tribunal, but I thought in his capacity as the Minister of Jobs, he would be very interested in the connection between being denied an education and the increase in homelessness and unemployment for disabled people. I also thought he’d have an interest in the vast number of parents who’ve had to quit their jobs or work less in order to take care of their children. Nothing. So the PowerPoint I made for him is included in your handouts as well.

I’d love to give my recommendations for the At Home program, which we were also approved for, but I know that my time is limited, so instead, my suggestions are in the handout as well.

Now I’m going to tell you about David. To echo the statements I know others have made before me, the wait-list times for assessment are just cruel. His referral to Sunny Hill was submitted in March 2018, and we are still waiting. I’ve called a few times to confirm they have not lost our referral, and every time they tell me, “He’ll be seen some time in August or September,” for a total wait time of around 18 months. He’s going to be in kindergarten.

We have been involved with the Centre for Child Development, and they have been wonderful with him. I think everybody just expected me to know about them already because Brian is diagnosed. I self-referred us there in February, and they literally told me: “Five is late for a referral to us, so we’re going to do a bit of expediting. Please make yourself available for these assessments and appointments.” And of course I have. I just wonder: how are we ever expected to hold a job in the face of appointments like this?

I know it sounds like a lot, but what I’m ultimately asking for is to invest in our children, just like the Pay Now or Pay Later report in 2007 suggested. Our kids deserve better than this.

Thank you for the opportunity to share my thoughts.

N. Simons (Chair): Thank you very much, Jennifer. Many of the comments you’ve made are reinforced by the strength with which you make them. So thank you for that. It’s important for us to hear it in its raw and true form. That helps us.

I look to my colleagues if they have any questions.

Laurie has a question.

[3:25 p.m.]

L. Throness: I just wanted to say that you missed Glen Hansman, who was here earlier today. He’s the head of the BCTF, so you could have talked to him about some issues.

Something that I appreciated that we’re hearing more about is the importance of the EA in the whole thing.

J. Newby: Yes. It is critically important.

L. Throness: What kind of improvements do you think we need in EA training and so on to make them more effective?

J. Newby: What I would love to see, first and foremost, is all EAs full-time, bell to bell, because that’s something else. A lot of them are getting burnt out, working two and three different jobs. They need to be 100 percent focused on this, because we are talking about the foundation for children and their entire lifetime.

I would also love to see every single one of them having Nonviolent Crisis Intervention and ABA training, specifically — not just a generic, “What is autism? Oh hey, it’s a brain abnormality.” No. You need ABA, because this is what works. This has 50 years of science behind it. Get on board with it. Why is this not standardized in all of their training? Everyone thinks ABA and immediately goes to autism, but it’s a process of breaking down a task and working on the steps in a way that makes sense to that direct person. It can really be used with anybody.

That’s the number one thing — full-time, Nonviolent Crisis Intervention and ABA everybody.

N. Simons (Chair): Well said. Yeah, we’ve heard, recently, a lot about the EAs. Michelle is nodding. She just knows what you’re talking about, directly.

Well, thank you very much, Jennifer, for taking the time. Thank you for bringing your little guys with you.

J. Newby: Thank you very much for having me.

N. Simons (Chair): We’ll ask Maya Russell, please.

Very nice to see you. How are you?

M. Russell: I’m good, thank you.

N. Simons (Chair): Welcome to the committee. We have a ten-minute limit. I’ll give you a two-minute warning if I get your attention. You’re setting your own alarm, aren’t you. We’ll have some time for questions afterwards.

Welcome to the committee, and the floor is yours.

MAYA RUSSELL

M. Russell: Thank you so much to members of the standing committee for coming out to do these meetings and for giving me a few minutes of time. I’ll say, at the outset, before I possibly test your patience, that I understand that you’re looking at children with neurodiverse conditions and that the way I saw that listed did not necessarily include what I intend to talk to you about, but I am here anyway.

N. Simons (Chair): Yeah, that’s why we said “etc.” We were conscious about if we started naming, we would be there forever. We thought, “We should name none,” and then we thought: “Well, we need to have some clarity.”

M. Russell: Okay, excellent.

What I want to talk to you about is my experience as a parent of a child with severe ADHD as well as anxiety.

N. Simons (Chair): Well, yes, thank you. ADHD was one of the ones that we didn’t list.

M. Russell: Wonderful.

For the purposes of the government of Canada, CRA, our tax body, considers ADHD a disability. With that recognition, it certainly, I think, deserves the status of disability. That’s why I’m here to talk to you about it today.

I’ll start by saying that in my experience, the province of British Columbia, over the last many years, has really abandoned children and families to navigate, alone, a fragmented, completely inadequate system, which is not built around the needs of children or their families. Children are paying the price.

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.

[3:30 p.m.]

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 before we change these odds for children like mine?

I’ll tell you a little bit about my story, sort of going through the stages. Starting at the stage of assessment, I think that in a three-year-old preschool class, we got to about October before I was pulled outside by the teacher and told: “You know, there’s something about your kid.” It was the first of many, many difficult conversations.

We were unable to access a psychoeducational assessment through our school district once we hit the school system. That was not offered or considered to be available, so we paid privately. My husband and I were in a position where we were able to do that. We paid about $4,000 for a psycho-ed assessment. Several years later, we paid again for a second psych-ed that we needed in order to confirm her diagnosis for middle school. That was another $3,000. So $7,000 on assessments.

The diagnosis that we received did unlock some support in classrooms. It provided medication and some limited supports outside of school. But for others…. I know many children who my daughter played with on the playground who, years later, have not received the diagnosis, the assessment — families who continue to flounder, and children who are unable to access school supports.

Moving on to the stage of school supports, I know there’s a funding review going on. I should mention that I am a member of the board of education in school district 40, and I’m not presenting in that capacity today, just as a private individual. With the most prevalent if not one of the most prevalent neurological conditions, my experience has been that the school system pretends that it doesn’t exist in classrooms, but teachers and staff and families and parents and kids can tell you it sure as heck does exist in classrooms.

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.

Our story is that my child has been found to be, for funding purposes, in category H. Her school fills out a form every year to say that she has an intensive behavioural or serious mental illness. She’s been in this category for several years — the majority of her years in school.

While I believe passionately that there should not be a stigma around things like mental illness, I think the fact that my child has a chronic neurological disorder should come with something other than being called a severe behavioural problem or having a serious mental illness. There is a lot of stigma attached to those words, and none of them are supportive.

We do receive very limited services from incredibly dedicated school staff — I’ll say with a massive revolving door, though. I think I met six different counsellors in the time that she was an elementary school student. There’s no equity in the provision of services.

[3:35 p.m.]

Students like my daughter, who has the ability to completely blow apart a classroom on a bad day, are 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, and I really worry about those children.

I also worry about racialized children — Indigenous children, who we know deal with discrimination and racism. How many of these kids are not receiving appropriate assessment and are being discriminated against?

Looking next at the phase of early intervention and treatment, the evidence supports three main interventions: medication, behavioural interventions and support for parents, and cognitive behavioural therapy. So I ask you: which part of the government is responsible for these?

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.

The Ministry of Children and Families has the job of providing mental health services. Placing these services in the same ministry that has the responsibility for child protection is deeply, deeply problematic. I’m sure that this is not the intention, but many families believe that they are seen as a problem when they walk in the doors of those buildings, and there is a huge stigma in accessing services.

Again, because kids with ADHD are often misunderstood to be kids with a behavioural problem — and therefore, a parenting problem — think about what additional barrier that is for parents to access, when you’re going in the child protection door to say: “My kid’s out of control. Maybe they’re hitting me. Maybe I’m screaming at them and locking them out of the house, because I don’t know what to do.” That’s a pretty huge barrier. I’m white, upper middle class and educated, and I still find it difficult. So imagine how many just don’t make it through.

It’s fragmented. As you know, the responsibility is on the families, and ironically, of course, this is an inherited condition. So although I can function extremely well in many parts of my life, I can tell you that things like setting and keeping appointments, coordinating multiple experts, long-term planning and tracking data and information are a challenge for me. I’m not ideally suited to support my child, and I need some help with it.

I will give the remainder of my comments in a letter. I really appreciate your time. I think that we need evidence-based in-home behaviour supports for families. We need consistent psychiatric services and monitoring, where a child has somebody other than a GP who sees them from the beginning to adulthood. We need more support in puberty and transition years, especially for girls. We need to support a full provincial centre of excellence, and we need regional services in every health region.

N. Simons (Chair): Thank you, Maya. Well said. You’re getting silent applause from the people behind you, which is fine. I like that. It’s encouraging. A lot of head nods as well.

Laurie’s got a question.

L. Throness: Thank you for your presentation. Obviously, you’re very knowledgable in what you say, and we’ve heard many of the things that you’ve said today from other people.

One thing that I haven’t heard before was the…. I think what you suggested was that there’s a conflict of interest with MCFD. Could you describe that a little bit more? You said that MCFD has a responsibility for providing mental health and child protection but that there’s some kind of a conflict there. Maybe I got it wrong.

N. Simons (Chair): I don’t think Maya was implying a conflict as much as a….

M. Russell: It’s a barrier.

N. Simons (Chair): It’s sort of like the probation officer with a gun — someone supporting you and also policing you at the same time.

M. Russell: Yeah. I wouldn’t say it’s a conflict of interest at all. The interests from the ministry are the same. But it’s a huge barrier for families to access, because to say you need help from child and youth mental health, you need to say that you’re not in control of your family life, and you worry about whether that becomes a child protection problem, especially if you’re a vulnerable family.

L. Throness: I see. Okay, thank you.

N. Simons (Chair): We’ve heard that same thing for parents of children with fetal alcohol, which is almost…. You know, the ministry…. Clearly, it’s a fear parents have — that their request for support will be interpreted as a sign of weakness, when it is, in fact, a sign of knowledge and experience and reality.

[3:40 p.m.]

Thank you very much, Maya. That was good. We look forward to getting the rest of your comments in written form.

M. Russell: Thanks again.

N. Simons (Chair): We’ll move on to our next presenters, two presenters from Inclusion B.C. — Dan Collins and Karla Verschoor.

Welcome, and thanks for being here. You know the drill.

K. Verschoor: We have ten minutes, right? We’re going to start a timer, because we’re ambitious today.

N. Simons (Chair): I’m starting now, so go right ahead.

INCLUSION B.C.

K. Verschoor: We’d like to, first off, acknowledge that we’re on the shared territory of the Katzie, Semiahmoo and Coast Salish people today.

I think many of you know of Inclusion B.C. We’re a provincial federation supporting children and youth with special needs and adults with intellectual disabilities. We will submit a written submission, but we’re going to attempt to kind of respond to your guiding questions from three different perspectives: from a children and youth service perspective, the K-to-12 education system and then how that all translates into transition to adult services.

Dan is going to get us started with the children and youth services.

D. Collins: My name is Dan Collins. I’m the executive director of the Inclusion Langley Society. We deliver a range of early intervention programs and services for children: infant development services, Aboriginal infant development, supported child development, Aboriginal supported child development, after-school programs, family respite services and an early-years suite of services that were recently added to our organization.

I have all these lovely notes and things that I wanted to share with you today, leading to a number of recommendations. But at the last minute, I’ve sort of decided to shift this — because I know you’ve been listening all day to a lot of information — and share a story that actually happened to me this morning.

I was in a conversation with a local supplier who has provided graphic support services to our organization for the last 15 years. In the call this morning, she said: “You know, I’ve never really understood the range of what you do and the impact of what you do until the last six months, when I finally had my four-year-old son diagnosed with autism.” She said that so many lights have come on, in that experience, over her interface with our organization in the last dozen years.

She then proceeded to tell me that she and her husband made the decision to pay privately for an assessment, because they’ve been waiting such a long period of time. They knew intuitively that something wasn’t right with their child but were waiting and waiting and waiting. They were in a position where they could afford to have that assessment done and, consequently, learned that their son, in fact, had autism. Of course, they’re now probably aware that this is going to set them on a journey and a career, for sure.

This is not an uncommon experience for us. We meet many families that intuitively know that their child is not meeting developmental targets or is struggling in one form or another, and the wait for assessments is deeply problematic and stressful for families. Of course, after the identification and a diagnosis, it typically means that you wait longer for access to services.

I know that in our community — and I think it’s probably reflective of many — we’re increasingly overwhelmed with the number of children, just generally, that are identified as having some form of complexity or challenge. Families are crumbling in the inability to access the necessary supports and services that they need, particularly noticeable in terms of access to child care.

More and more families aren’t able to access child care services, because the child care providers aren’t able to recruit the skilled support people that they need or, in fact, we don’t have the resources to provide the child care setting with the money that they require to hire ECEs to be able to provide support. So we’re meeting an increasing number of families where one family member has had to pull away from work, and that starts to cause not only a financial strain but an emotional strain on families. We’re seeing lots of family disruption and discourse.

[3:45 p.m.]

There’s the wait time to access appropriate assessment and then, of course, the wait time to actually receive and access the services that you need to make sure that your children have every opportunity. Of course, that includes increasingly lengthy wait-lists for speech and language, occupational therapy and physiotherapy.

I guess, quite simply, in term of recommendations for the future, we need to eliminate the wait times for assessments so that children and youth can access supports and services when they need them. We need to increase, as well, public awareness and knowledge of educational programs, services and supports. We’re still seeing, as has been, I’m sure, mentioned a number of times, that there is a process that one goes through in getting to that place of diagnosis and a stigma and a worry about what the future holds for children. And there are obviously benefits that would come from more regionalized assessment centres.

K. Verschoor: I’m so pleased to be here with Dan, because 30 of our member organizations provide those really vital children and family services. We also receive a lot of input from our community-inclusion advocacy program, and about 50 percent of those calls are from families in the K-to-12 system. Again, I think I’ll skip some of my notes and just jump into a story. This would be a common call we might receive.

A nine-year-old boy has a diagnosis of attention deficit disorder and oppositional defiant disorder. He may also have autism. He’s been waiting for an autism assessment for over a year. He’s moved to three different schools. He’s currently attending school for about an hour and a half a day. His mother is a new Canadian and has four other children. She’s a single mother unable to take English classes or access work because she has to be ready to pick up her child at any given time throughout the day.

How do we respond, as a community, to this family? She’s not eligible for respite. We talked about that in one of the earlier presentations. She’s not attached to CYSN supports. Our only response is a child protection lens. We get those kinds of calls time after time, where, really, our inability to provide wraparound supports and resilience to families translates into a child protection situation.

I think you’ve heard from the B.C. Parents of Complex Kids about their At Home program. I think they presented earlier today. In our consultation with them, one of the things that was just so profound to me is that that At Home program was developed when we were bringing our children out of institutional settings, and it is having the exact opposite impact on families now. Because of its inadequacy and rigid eligibility criteria, families are put in a position where they’re thinking that the best option is to put their child in care so they’ll get the supports they need. That’s heartbreaking for someone who knows this history.

One of the things in our recommendations: we really want to have cross-ministerial collaboration from Education, Health and MCFD on providing timely assessments — Dan mentioned it — prior to kindergarten but also in school if it’s identified later. And then also address those wait times for psycho-ed assessments.

I think that brings us into the adult services. By the time people enter the adult world…. You’ve already heard all the examples of people being fatigued, navigating the maze, fighting for services. They almost feel like there’s an opportunity for this fresh start once they enter adult services, but unfortunately, for many, that is not the case. It can be one of the most stressful experiences.

Recognizing this, the ministry introduced the services to adults with developmental disabilities, which is a navigation service to kind of support that transition from K to 12 and MCFD into adult services. That was a fantastic initiative. However, it was attached only to those youth who are CLBC eligible. That left a huge swath of young people without any real place to land or support in navigating.

[3:50 p.m.]

So one of the recommendations I’d really like to see, now that STADD has moved back into the Ministry of Children and Family Development, is maybe an opportunity to look at broadening that eligibility to include a broader range of people with neurodiversity and special needs.

I’m going to turn it back over to you, Dan.

D. Collins: One of the criticisms that we hear from families as they transition into adult services is the use of the GSA, or the guide to support allocation, by Community Living British Columbia — originally, I think, intended as a tool and as a guide to enable facilitators and analysts to be able to look at some degree of equity in determining the most appropriate array of supports for young adults as they transition.

Increasingly, I think it has become more perceived to be a blunt instrument that is used to limit the amount of service that a transitioning young person might receive. That is often translated into the sort of — I don’t know how to describe it — experience families have of learning, once high school is finished, that they’re going to be accessing $233 a month in support, and hopefully that will be sufficient to enable them both to still make sure that their young family member is looked after while they’re both working. Needless to say, that’s not beneficial for anyone.

I think that we’d like to see the GSA not only used more as a guide but also to be perhaps utilized with a suite of other tools that enable those making those decisions to more accurately reflect the kinds of supports that young people need to be successful at transition.

K. Verschoor: I just want to take my last 30 seconds to raise the last point around health and mental health supports for people upon transition.

In many areas of the province, there’s an eight-month wait time to see a psychiatrist, and for most, the only supports they’re given is kind of that triage between ER and the police department. I guess in our final recommendation, I’d really like to see improved collaboration between CLBC, the Ministry of Health and the regional health authorities to meet the health needs of youth as well as — this is the big one — to eliminate those geographic barriers to mental health assessments and supports by regionalizing those services.

N. Simons (Chair): Great. Very well-thought-out recommendations that we appreciate very much. We’ve heard quite a bit about the At Home program.

I’m just wondering about the assessments. We know it would be great not to have a wait-list at all. At the same time, some people have suggested that we should provide those services…. Regardless of whether a child has received their assessment, they should be able to access the services — pending. What do you think about the idea of not relying on assessments?

D. Collins: I would have no issue with that. From the perspective of parents and from the perspective of service providers, there’s an obvious, identifiable need for children to have the kinds of supports that they can access at the earliest possible age. We don’t have, for example, significant wait-lists for our infant development program. We’re able to meet children quite young and begin to work with families to explore where there might be some developmental delays and to be able to provide strategies and supports to moms and dads to support their children.

It becomes really problematic when parents both need to work and they need to access preschool and daycare services. It’s obvious that many children will require additional supports to be welcomed into those centres and to be supported well in those centres. I don’t think it requires a diag­nosis or an assessment to know when a centre is going to require extra support to be able to support that child properly.

K. Verschoor: Can I just add to that? I do think it also depends on which services we’re talking about as well. If you were to go to the K-to-12 system, certainly we should be introducing supports independent of the criteria that allow additional funding to come to the districts. However, I do think an assessment is absolutely critical to understand the way a young adult’s brain is working to allow their IEP to meet their individual needs. So definitely, for me, it depends on what services you’re referring to.

N. Simons (Chair): It was a bit of a blunt question.

Laurie, did you want to have a quick…?

L. Throness: I just have a general question. We keep hearing from wonderful people like yourselves who are part of a charitable network of people who provide services for people with neurodiverse needs. Where do you fit in the constellation? Where do parents go to find out about you?

[3:55 p.m.]

There are many parents, some of whom might have been through here today, who would have loved to have heard about the services that you provide. Is there any one place that’s a repository of all the information for all the private and public charitable facilities that exist in B.C.? Is there anything?

K. Verschoor: Well, I think that could be found in the variety of federations that exist within our province. Inclusion B.C. is a federation of 60 service providers, as well as hundreds of individual and family members. I don’t think we should assume that we’re not connected. There were many, many conversations prior to this submission process, where people were connecting and determining what one another was going to say. I think there’s always work to be done, in terms of how we can connect better. But I wouldn’t…. I feel like that is starting to shift, in terms of the way that we’re connecting to one another in community.

D. Collins: Where there may be still some complication is for newer families to our country and families who have language barriers.

N. Simons (Chair): Thank you so much for your time and for everything Inclusion does. I’ve had fun interactions with the organization over the years.

K. Verschoor: Thank you for your time today.

N. Simons (Chair): We’ll have a whole committee report on GSAs at one point.

D. Collins: I look forward to that.

N. Simons (Chair): All right. Thank you very much.

Committee members and guests, we have the Vancouver General Hospital — Dr. Kyle Burns and Lizzy Ambler.

Welcome to the committee. Welcome to the Sheraton. Thanks for being here. You have ten minutes, and I’ll be your reminder at two.

L. Ambler: Our apologies. We weren’t sure that the…. We thought there was PowerPoint, so we will send you notes.

N. Simons (Chair): Yes, absolutely.

L. Ambler: We’re actually representing Vancouver Coastal Health.

VANCOUVER COASTAL HEALTH

K. Burns: Yeah, we’re actually not from the hospital.

My name is Kyle Burns. I’m a psychiatrist. I’m the medical manager for the child and youth mental health teams in Vancouver. I am responsible for the medical component, but I’m also involved with programming for all of the child and youth mental health services that are in Vancouver.

L. Ambler: My name is Lizzy Ambler. I’m the operational director for child and youth mental health and substance use.

K. Burns: The caveat is that I’m a psychiatrist, but actually, I don’t have a particular expertise in neurodiverse special needs. My background, actually, is working in children and youth with suicidal behaviours and personality disorders. It was only about a year and a half ago where I started doing a lot more of this type of work and seeing how the community, the child and youth mental health teams, are responding to a really complex group of kids.

I’m sure you’ve been hearing all day about a lot of the problems. I’m going to share some of the problems that we’ve seen, as well, and, hopefully, some of the successes that we have had, in terms of understanding what might be helpful and what has worked, from our perspective.

I appreciate that you’ve cast a wide net and that this wasn’t a specific neurodevelopmental problem, but that you’re thinking about these things in a broader network, because that’s what we see in the community. When a kid or a family comes to one of our programs, sometimes they do come asking for a diagnosis of autism, but that’s not really what they want. They want help. They want to not have their kid exploding anymore. They want to be able to get into school. They need help and support.

This particular population is challenging, though, for our clinicians and for our physicians because they’re complicated. Often diagnosis is difficult to get to, and it’s often not totally clear out of the gate, to know what exactly is going on. These are vulnerable kids and vulnerable families. We know from some of the literature that kids with developmental delay are more vulnerable to physical abuse and sexual abuse. This, of course, sets them up later on in life to actually have more mental health problems.

One of the challenges, because there has been a division of services between mental health and CYSN and different service providers, is that often — I’m sure you’ve been hearing about barriers all day — that’s what will happen. We’ll have a kid come in, and there’ll be this debate between the different service providers and the hospital on what the problem is, actually: “Is this a mental health problem, or is this a behavioural problem? And whose responsibility is this?”

[4:00 p.m.]

It becomes a bit of a hot potato, particularly with kids and families where the behaviours are more extreme and more problematic — right? — which, of course, is terrible. Families basically have a whole bunch of people pointing fingers at each other about who’s responsible, which is not helpful.

One of the challenges we’ve faced is that for complicated kids, especially when there are a lot of behavioural problems in the family, people are quick to look towards a specific facility or a specific institutional intensive…. It seems like, “Oh, this is really complicated, so what we need is tier 5,” the most intensive intervention. But those aren’t permanent.

I mean, these are two, three months, but these are problems that are long-standing. They’re often very early on in childhood, and they’re not something that’s going to go away with a three-month stay in intensive care or at a hospital. So these are problems that really need to be treated with a much longer lens. There is some of that available, but it often requires a sophisticated sort of integration of different services.

How are we doing for time, actually?

N. Simons (Chair): At 4:22.

K. Burns: Okay. So diagnosis. I know you’ve heard a lot about diagnosis and barriers to diagnosis. Just a couple of quick points on…. When diagnosis is connected to either a treatment program or to a funding program, it skews everything, because the diagnosis for autism or FASD or all of these things is highly subjective.

We do go to great lengths, as psychiatrists. I’m not trained in the diagnosis, but we do actually do our best to come up with the most rigorous and reliable diagnostic. But you can’t tell me that — you know, someone who goes into health care, who realizes that whether they rate a four or a five on the scale may be the difference between whether this family gets support or not — they aren’t skewed a little bit.

The other piece is that it’s often a huge distraction. It’s that folks are so focused on getting the diagnosis. And families are fighting for this, when in fact, actually, we should be working and focusing on treatment. We’re trying to get them to treatment, but they’ve spent a year or two waiting for this diagnosis and then they have the diagnosis, and it’s like: “Okay, now we’re going to start on treatment.”

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.

L. Ambler: Really, what we’re here to demonstrate…. And we come from a large system. Kyle is so passionate about this work and really wanted to be here to say that we don’t think that we need more boxes to create more bottlenecks to have diagnoses for these young people and their families — to support their families.

We’re really hoping that this committee can listen to the many people before us. What I was hearing and what we truly believe is that the people, the communities, need the resources at their fingertips to creatively wrap around with the services there or add on the services that that family is needing to address the issues, while they get that diagnosis. But help support that family that is just crumbling. More big boxes to try and solve this issue is not going to support the families. It takes years to build them, and they need help now.

We really want you to hear from a health authority that we feel that’s an important approach — to ensure that the communities have the resources they need and have a say in how that’s actually put together to support the community.

K. Burns: A couple of the programs that we have right now…. Actually, just before I came, I talked with one of our clinicians who…. She runs a program called Boundaries. It’s a program for kids with sexual behaviour disorders. So they’re getting themselves into trouble by acting inappropriately. About 75 percent of the kids have either autism, FASD or an intellectual disability. Then the other 25 percent have ADHD. So the vast majority are running into trouble because they don’t really understand how….

[4:05 p.m.]

The program doesn’t require you to have the specific diagnosis. She was just saying: “It’s really interesting, because we had a kid come in who was having some problems.” They started to help him and realized: “Wait a minute, some of how he’s thinking is a bit funny. Let’s get him diagnosed.” The diagnosis has been really helpful. But it started with bringing the kid into a team to treat the specific problem that they have some expertise in. These clinicians are skilled. They can distinguish between: “Oh, this is more ADHD. This is more autism.” And we can try and help to get the kid support in other areas.

We’ve done a similar thing with the partnership with Vancouver school board, where we have an intensive program for kids who aren’t fitting in to school. It’s our Tupper Nova program.

It really depends on how you define it. A lot of these kids are kind of quasi-diagnosed. There are questions about diagnosis. But they all have the same problems. They can’t relate well in school. It might be trauma. It might be autism. It might be ADHD.

But the program itself is designed to provide a ton of support for 24 kids. They have a lot of expertise. There’s a psychologist there that can diagnose if we need it. There’s a pediatrician there who can manage some of the medical stuff. So we’ve got a whole team.

L. Ambler: It’s in a regular school.

K. Burns: It’s in a school. They spend their school year there. We’ll have the diagnosis as part of it, but it’s as part of a full team providing, actually, the treatment that’s there while they’re in school. So it’s not an artificial institutional setting. It’s school. They work with families as well.

N. Simons (Chair): So there’s this artificial waiting-for-assessment thing that sort of gets in the way of everything else, to summarize very bluntly.

K. Burns: It can be.

N. Simons (Chair): The assessments are crucial. But in the meantime, what we’re saying is the kids that are not diagnosed at the school in that special….

K. Burns: The service should be based on the needs, right? If a kid is having trouble with school, let’s help get them to school. If the kid is having trouble with really intense aggressive behaviour, let’s have a group of people who are really familiar with this.

We would like to establish a team that has expertise in the typical problems that are presented. But we really need a multidisciplinary team. It’s not sufficient to have…. Often, the model right now is you have a mental health clinician, who case-manages along with a psychiatrist who may add some medication.

Actually, no, for this…. These are more complicated. So we would need behavioural interventionists. We’d need speech-language pathology and all of the other folks involved, which we have at the Tupper Nova program. But we’d like to have it more community-based. We’re in the midst of working on that.

N. Simons (Chair): Ronna-Rae has a question.

R. Leonard: If I can remember it now. It’s so late in the day.

Thank you very much for your presence.

Let Laurie go first, and I’ll try and put it back together.

L. Throness: I have a question. I was surprised to find from the clinicians that the diagnoses of these conditions are highly subjective. Are you saying that when ADHD or autism is diagnosed, they may be wrong?

K. Burns: They can be, yeah. Now, we’ve gone to great lengths to make sure that the diagnosis of autism, especially because it’s tied to funding, is as reliable as possible. It is most of the time. I think when you look at the research, it’s about 86 percent that are reliable, meaning if I diagnose, there’s an 86 percent chance that someone with similar training would also diagnose the same problem.

But these are often pretty narrow and very selected groups of people. A lot of the kids we’re dealing with have a combination of things — a disrupted family, maybe some addictions issues. There might be a question of intellectual disability and autism.

So often the diagnosis is very controversial, actually. Not with every…. There are plenty of kids where it’s clear as day and you don’t need the highly…. But yeah, it’s tricky to diagnose, and you have to go to great efforts. The diagnosis is an interview with the kids and your impression of things like eye contact and reports from the parents. Did they make eye contact early or not? So you really do….

It does require a lot of sophistication and expertise, and we can approach reliability. But it’s nothing like….

L. Throness: A broken leg, for instance.

K. Burns: Nothing like a broken leg.

L. Throness: We’ve heard dozens of new disorders that I’ve never heard of before. It seems that we’re slicing and dicing the issues more and more finely all the time.

[4:10 p.m.]

I’m wondering. Beyond the large ones — say ADHD and autism and FASD, which are the three big ones that we hear about all the time — how important is it to slice and dice and isolate those different conditions in a more precise way?

[M. Stilwell in the chair.]

K. Burns: From my perspective…. I’m not a researcher. I work for UBC, but I’m not in a research lab. The kids that are in front of me…. It’s much more important to understand what the behaviour is in front of me and what exactly is going on.

It’s true. Understanding some of those diagnoses can be helpful, but I think it’s overrated. Psychiatrists can be a little bit insecure sometimes. In our efforts to be real doctors, sometimes I think we do slice and dice way too much, rather than just looking at the person in front of you and saying: “Okay. Well, what’s the problem?”

Well, the problem is that whenever there’s some kind of rule that’s being enforced or something like that, they go into a rage, they throw stuff, and they hit people. That’s a problem in and of itself. Figuring out what’s behind that can be helpful, but it’s a more useful thing to help the family with that.

A lot of the principles that we’ve used really successfully in autism, like the behavioural principles, apply to all of us. I use those things on myself to improve my own behaviours, because they’re a bit universal. There’s some stuff that is specific to autism. But a lot of this…. I think the slicing and dicing should be done later, in terms of: “Oh, is this ADHD? Is it that other thing?” I think that it’s often not that helpful.

M. Stilwell (Deputy Chair): Thank you, Dr. Burns and Lizzy.

I don’t know if you have a question…

R. Leonard: I do. I do.

M. Stilwell (Deputy Chair): …that’s quick. We’re tight on time — already past. So quick.

R. Leonard: I gave my time up so that I could get it better.

Thank you very much. It’s nice, at the end of the day, to be able to ask a question around…. We heard earlier from some folks who say that best practices are to do, basically, outreach and go to where people are living and functioning to get the best kind of assessment of a situation. Would you buy into that theory of contextualizing the assessments?

[N. Simons in the chair.]

K. Burns: In terms of understanding what’s going on, actually going to the home and seeing the behaviour in its natural environment?

R. Leonard: Yes.

K. Burns: Oh yeah. For sure. It gives you way more. We’ll often do that — to really understand, behaviourally, what’s going on. You get a report, but people’s memory of these things is actually really limited. We have a couple of behavioural consultants on staff.

This happened, actually, on Friday. I have a family. They’ve got a report of what happens and the general patterns of things. Then, when Tina went to their house, it was a totally different picture about the moment to moment that went on.

Yeah. Certainly, I think that’s a very useful thing. It does add to some of the resources that get put into the diagnosis piece. So again, for that, it’s helpful when it’s part of a team.

I started by doing some basic interventions with the family. I wasn’t sure what was going on. I wasn’t sure diagnostically. I brought Tina in. She went to the house. She took a look at it, and then we got this added information. It developed over time.

R. Leonard: Just quickly, following up on that, there’s the idea of being needs-based as opposed to needing the diag­nosis first. I mean, it makes a whole lot of sense. How do you manage it so that it doesn’t open the floodgates, in the sense that then everybody’s eligible for some kinds of services and supports when maybe…? That’s the criticism I’m hearing. I’m sure there’s an answer to this that would help.

K. Burns: I think there’s an answer. Look, Vancouver Coastal has been doing a lot to shift how we approach this. We’ve got a whole strategic plan and things like that. What’s been really fascinating to watch is…. We are responsible for everybody in Vancouver. Every kid with mental health problems is our responsibility. We have to figure out a way of triaging. We have to figure out a way of providing…. The most common problem is anxiety, so we have to find efficient ways of delivering anxiety.

The challenge that I’ve had with these kids is that it’s complicated, but the time and energy that we’re putting into these kids is not being put into treatment. It’s meetings and case management meetings and arguments with CYSN and MCFD and Children’s Hospital. There’s an incredible amount of inefficiency. If we….

[4:15 p.m.]

I think, for us, we feel the floodgates anyways. We have to treat everyone anyways. What, I think, we do want to shift from, though, is the hot potato of: “No, this is your problem. This is our problem.” It’s like: “Okay. Well, let’s actually deal with the kids as they come in the door.”

We do our best to reduce wait-lists. I don’t even think we really know what it would look like, once we have a more efficient system. But I think there are a lot of efficiencies.

N. Simons (Chair): Thank you very much. We hope we can count on your advice as we pursue this issue further.

K. Burns: I’d be happy to.

N. Simons (Chair): You as well, Lizzy. Thank you very much.

L. Ambler: Thank you for your time and your very long day.

N. Simons (Chair): Yeah, but it’s very informative.

We have one more presentation. We are calling up Jodie Harris.

Welcome to the committee. Thank you for your presence here. I’ll start the timer and give you a two-minute warning.

JODIE HARRIS

J. Harris: Thank you for holding this. I’m here as a parent.

I had an email that came to me with a poster about the meeting. I was really excited, and then I almost didn’t come because it spoke of ASD, FASD, cognitive issues and developmental issues. I have twins with severe ADHD. When I saw it wasn’t even listed, I just thought: “Oh, here we go again.” Then I thought: “You know what? If I don’t do this, if I don’t take this opportunity, I’ll never forgive myself.”

N. Simons (Chair): We had trouble figuring out the language to use in that, so we’re just glad you’re here.

J. Harris: So I have identical twin girls who turn seven on Friday. They’re just finishing up grade 1. They’re our only children. We didn’t have a yardstick to measure against, but I would say, from a time early on, we kind of thought something was up.

When they were two, we asked our family doctor to refer us to a pediatrician. It took us close to a year to get in. We saw her just after the girls had turned three. At that point, they were barely able to…. They were very verbal, but they didn’t speak an actual language. They had their own language, which we think was partly twin speak. But we were referred for some speech and language therapy, which again, took us almost a year to get into.

By the time we got access to the speech and language program at Surrey early learning, we were six months away from aging out of having that option available to us, because they discontinue it when they turn five and go to kindergarten.

In the interim, my husband and I took some courses to, basically, learn how to teach speech pathology to our own children when they were three and started preschool. When I went back to work after maternity leave, my husband basically quit his full-time job to be the stay-at-home parent and work part-time evenings and weekends. I think we had envisioned that when the kids went to real school, like kindergarten, that would change. It hasn’t because we actually literally need a parent who is flexible and available for our kids on a regular daily basis.

One of the girls has more pronounced issues than the other. But at three, we went to preschool, and the teachers were, like: “We think something is up.” They were talking about autism, and they were talking about sensory processing. We were back at the pediatrician, and at four, my girls were diagnosed with significant ADHD.

We started with behavioural intervention and, again, taking courses for parents with kids with ADHD. We then, just before they went to kindergarten, started medication, and it was a really hard decision. Medication has been rough. One of them is now on medication No. 3, and she’s actually functioning relatively well in school. The other one has not tolerated medication. It actually made her symptoms worse, so she’s currently not medicated at all.

Twin A is the one who’s doing really well. When I say really well, I should say really well for her, because she’s nowhere near being at grade level. She can’t print very well. She is below grade level at reading. She’s below grade level at math — everything.

[4:20 p.m.]

The other one, twin B, when she went to kindergarten, was put on a gradual entry program. Unfortunately, I think as a result of a teacher who did not have a good understanding of our challenges, she never went to school for a full day once in her entire year of kindergarten. They put her on a gradual entry program, and then they just kind of stopped gradual entry for her.

At the end of preschool, I had reached out to the school I knew we were going to. I tried to set up advance meetings and tried to communicate to them what our kids were like. I tried to have them set up some supports for them in advance, and it was pretty much to no avail. I don’t fault the school because, quite frankly, we are blessed to have an amazing public school that we go to.

They did for twin B, because she struggled so much, cobble together some unfunded EA support for her last year. That looked like having one different EA every hour to two hours of the day for a five-year-old kid who struggles with transitions. While it was somewhat helpful, it really was not helpful. She spent most of her school year either in the IST teacher’s room or in the hallway or in the time-out chair.

At the end of the school year, we were lucky to get a diag­nosis of celiac disease. One would think: what does that have to do with neurodiverse issues? The weird thing is that it’s a chronic health issue. So she’s now got a provisional designation for a gastrointestinal problem and no support for her mental health and neurodevelopmental disorder.

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.”

They gave her a provisional designation at the beginning of this year. Then I dropped her off at school on May 22, I think it was, only to have her teacher tell me that they’re now looking at pulling her provisional hours again because they’re obviously not satisfied that celiac disease is an issue with her being at school, although it is, because in combination with her ADHD, she can’t regulate her gluten-free requirements.

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, and we are 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.

The reality is we’re lucky, because we have the income, we have the education and we have the intelligence to be able to advocate for our kids and to be able to fund some of these services for them. We’ve got other kids in our school who don’t have parents who have the abilities that we have and whose kids are going to fall through the cracks.

I guess it was really just to take the opportunity to say that if you’re looking at how you are supporting kids, how you are supporting families, how you make those decisions…. I mean, they are hard things to figure out, right? They’re really hard things to figure out. But the reality for us has become that because we don’t tick one of three particular boxes on a form, we’re entitled to nothing.

I’ve got otherwise really intelligent, really sweet kids who are not going to do as well as they could do. At the end of the day, I think we all want the kids in our communities to grow up and be really good, productive, moral human beings. I think we have the ability to get them there. I just think we could improve the way that we’re supporting them in their early years.

N. Simons (Chair): I just want to thank you for seeing past our inability to really phrase it perfectly. It’s interesting. We hadn’t heard about missing ADHD until today. It’s been very compelling, what we’ve heard.

I just want to say it’s like we did this because we knew we’d learn things. We knew we’d hear diverse experiences, all very charged with very personal stories. It takes a lot to share that with anybody, let alone a committee sitting at a table like this, so I just want to thank you for that.

I hope that you’re accessing all the advocacy and support that’s available. I’m hoping that we are able to succinctly reflect what we’ve heard to our government, to the province.

I know you’re not the last presenter anymore.

I look to my colleagues to see if there are any questions.

[4:25 p.m.]

L. Throness: It was very clear.

N. Simons (Chair): Yeah, it was very clear. Once again, thank you for presenting.

J. Harris: Thank you very much.

N. Simons (Chair): We have Wes Pidgeon.

Wes, you’ve been patiently sitting in the back. Welcome to the committee, and thank you for being here. We have a system that you may have heard of. It’s a ten-minute timer, and I will give you a two-minute warning. Welcome to the committee.

WES PIDGEON

W. Pidgeon: Thank you for having me. You have to excuse me. I’m a bit under the weather today, so I’ll do my best. Due to the time constraints, what I’m going to do is just basically read off my paper here. There’s a little bit too much information.

Now, I also spoke in front of the budget committee on October 10, 2018. I laid a lot of these concerns out as to one of the particular places I worked. The abuse is absolutely incredible. It’s the Maples Adolescent Treatment Centre. You’ve got kids trying to commit suicide there, and you do have kids that have committed suicide because of staff abuse and neglect.

Sorry. Are you all right there?

N. Simons (Chair): Just as long as you realize this is public, and anything you say may be interpreted in any way that it might be interpreted, if you say things that might be defamatory or otherwise.

W. Pidgeon: You’re afraid I might talk about the interactions….

N. Simons (Chair): I’m not afraid of anything. You can tell me whatever you want.

W. Pidgeon: Okay. So if I talk about some of the interactions, as Laurie Throness is sitting there smiling at me now, that I’ve had with people like Laurie and the taped conversation I had with his assistant, who confirmed things that were said about me…. It’s interesting. We talk about defamatory, and we talk about libel.

N. Simons (Chair): Well, I never said anything about libel, Wes. If you want to talk about the subject for which we have gathered here today, I’m offering you an opportunity to speak.

W. Pidgeon: Well, I am talking about libel, because one of the MLA’s offices tried to use protective services, the Sergeant-at-Arms office, as a weapon against me — for trying to protect these children in the provincial psych ward. They got caught. We have it all on tape. We have protective services going: “We didn’t know any of this. Why wasn’t this investigated?” When they made the referral, protective services all of a sudden said: “Nobody is touching this.” They washed their hands of it. There’s nothing defamatory about this.

We received emails from the children’s representative’s office from an individual who was not supposed to even look at that paperwork because he’s technically in conflict. The first email said they have no responsibility to protect those children in the psych ward. That man used to work for the ministry. That’s the first person I ever dealt with in the ministry, who they sent.

N. Simons (Chair): Can I ask you this question? Are you going to talk about neurodiverse children?

W. Pidgeon: Oh, you better believe I am.

N. Simons (Chair): So far you haven’t.

W. Pidgeon: Absolutely. That was what I was trying to do until I actually got interrupted.

N. Simons (Chair): Well, I didn’t really interrupt. I asked if I could just interject, and I interjected to ask if you could stick to the issue for which we have gathered here today. Thank you.

W. Pidgeon: I appreciate that.

I was a day program coordinator in the Chilliwack school district. It was the alternate system. These were some of the highest-profile youth in the district and the province of British Columbia and some of the most at risk for gang membership, which did come around. These are the youth that couldn’t get into the alternate school system full-time. My program was very successful. A lot of these kids are dual diagnosis, so many of the things we talk about here. Not just ADD, not ADHD, not fetal — it’s all of them.

From there, I went to the province of British Columbia’s Maples Adolescent Treatment Centre, psychiatric and forensics. That’s the last stop for youth in the province of British Columbia. There’s nothing higher. When a community’s not sure how to work with a child, that’s where the child is sent.

There’s a long history of abuse in there. Much of it’s very well documented, including a little girl named Serena Fry, who was 12 years old. She was picked up by a 27-year-old on a Friday night and taken to his apartment. Now, Serena had suicidal tendencies. She should never have been let out. She came back and reported that man raping her. The RCMP dropped the investigation and let him off the hook, and everyone thought it was over with. Serena committed suicide shortly after that.

[4:30 p.m.]

For years, a reporter tried to get the story and couldn’t get the story. Her biggest problem was that she couldn’t get staff to talk. Roadblock after roadblock. Every time they caught the minister of the day not quite telling the story the way it should, not my words — all the archives of the Vancouver newspapers will lay that out very clearly — they would just change the story. That reporter couldn’t get the story, but she won awards across Canada for freedom-of-information attempts for not getting the story.

Situations like that happened when I was there, and every time I tried to stop it…. It was amazing how staff would let it happen. One boy tried to dive off — well, he did dive off — Highway No. 1, the Boundary Road exit, trying to kill himself. The second staff found out about this…. He was five days, clinical depression, with his face stuck in a couch. Five days, and they let him out to go for a walk at night. He was part of a suicide pact on top of that. That young man…. We were told: “If the parents, press or the police call you, keep your mouth shut regardless.”

I was also the community service officer with probation in the Abbotsford-Mission district. That’s one of the biggest offices in the province. Six years on a crisis line, adult and youth. First Nations transition program. Group homes. Youth worker. I even worked with autistic savant adults. As per your media release by this committee, the statements in regards to individuals involved with youth: “We are interested in hearing directly from…caregivers and other stakeholders about barriers and challenges, and how processes and supports can be simplified. The committee is looking to better understand those experiences and explore opportunities to improve assessment and eligibility processes.”

I will focus on the Maples, because assessments were a cornerstone of what we did, and that was part of my job as a counsellor. Now, understanding the children and families protection act, section 14.1 and 14.2, if you know of a child being abused and you do nothing about it, you can get six months in jail, a $10,000 fine or both. All I have to do is have this conversation. Anyone in this room just has to have that conversation. As soon as the complaint is made, you have to investigate. It’s never been done to this day.

The only reason I gave my background — and that’s just a small little piece — is to show credibility. Somehow I don’t seem to know what I’m talking about. In fact, I’ve been called some pretty bad names. We have emails. We have text messages. We’ve got a whole variety of things of people doing their best to make sure I don’t talk. It’s as simple as that.

I have dealt with, spoken with, interacted with several members of this panel. One of them…. We met with them in downtown Vancouver on Burrard Street. I was with a father who handed over emails. Now, that individual never got back to us, but they did tell their staff not to talk to me about youth issues anymore, which your staff was more than happy to share. The father I was with that day…. I didn’t give the paperwork. He did. It also involved a specific child. But he also…. That father taped that conversation. That is not against the law.

When we hear things like potential slander or what have you, it’s interesting. I’ve spoken to a lot of people about this, and if the right thing had been done, I wouldn’t be sitting here today. This would have been taken care of a long time ago.

We’ve heard so many issues here today. I even heard about somebody saying that sometimes you get misdiagnosed. Some of these kids aren’t autistic. Well, when I hear these things…. We are front and centre on this. There’s somebody in this province who does diagnoses, and because their personal children have autism, they feel that many of the kids coming in must have autism.

They diagnosed one boy with autism. It turns out he doesn’t have it. If I hadn’t spoken with that family, that boy would have been recommended for autistic care as opposed to what he really needed. That young man is now thriving. That young man is doing great. What happened to him? He was sexually abused. It had nothing to do with autism. And when it finally came out, he started to wake up — when he started to realize he had a safe place to go.

I mean, I’ve got many, many notes here. I can go on and on, but this is nothing new. Like I say, I’ve spoken to many individuals, or I’ve spoken to their offices, and nobody’s ever come back. If they have….

[4:35 p.m.]

I’ve had people in offices say: “You know, I can’t talk to you anymore.” I said: “Why not?” And the lady who I used to work with in that psych ward said: “Because someone’s going to get hurt.” And they were crying. It’s the last time I ever talked to them.

You know, a lot has been done. I’ve got all my paperwork. I’ve got all my recordings. I’ve even got retired cops who will testify. The bottom line here is that we’re trying to make these kids safe and protect them. That’s the bottom line. That’s all my goal has been. Unfortunately, the blessing in this is that maybe we can see how to clean up a system by the many people who have turned their backs on it. It’s not hard to figure out.

Some people have gotten some real bad advice about not talking to us about this. When they tried to shut the Maples down back in the early 2000s, the reporter went to the Maples and found a staff member and said: “I’d like to talk to you about them shutting the Maples down.” It had nothing to do with the kids. It was on the front pages. I believe it was June 6, 2003. The young man said: “I’ve got to get to work, but when I get done, I’ll talk to you.” The reporter waits for him, and he comes out, and he says: “I can’t talk to you now. I’m in enough trouble already. I just want to keep my job.” And he left.

Like I say, we were told repeatedly: “If the parents press or the police call, you keep your mouth shut.” Well, I’m not smart enough for that. I’m not bright enough to know I’m supposed to go along when a child’s being hurt. It’s not in my nature. I have a long history of helping and protecting, and when I’m standing in an office and people start getting aggressive, then I’ll say it. We have the tapes. We have the witnesses. We have…. You name it. When I’m in a public forum one night….

N. Simons (Chair): You’re just about to run out of time.

W. Pidgeon: Like everybody else did.

N. Simons (Chair): It’s 10:39.

W. Pidgeon: There you go.

When I’m in a public forum — you’ll see it in that budget committee statement — and I’ve got members of political parties surrounding me, and their goal is to get me to punch one of them in the head so they could have me charged…. Not my words. We have it all backed up. We have the witnesses. We actually have the tape from the individual who will sign the subpoena. He will sign the affidavit. Not happy with it. He’s a member of that party.

I’m supposed to walk away from this? I’m supposed to be intimidated? So what do I do? I put my hands in my pocket, my head down, keep my mouth shut, and I quietly walk out the door. I’ve done it every time. Every time.

N. Simons (Chair): Any questions, committee members?

L. Throness: Just one comment. Not really a question.

N. Simons (Chair): Okay, sure. Go ahead, Laurie.

L. Throness: I’ve met with you before, Wes. What I suggested the last time we met, which was years ago, was that if you have evidence of criminal activity — and I think that’s what you’re talking about — that should go to the police. They are the ones, really, to address the issues that you have raised today.

W. Pidgeon: I have met with the Burnaby RCMP, where the actual Maples Adolescent Treatment Centre is. These are the same individuals who did not protect that little girl. They will not touch this. When a little upstart newspaper did a story about me trying to protect these kids, on the front page, it was amazing the blowback we got from that.

I did a series of eight radio shows on co-op radio with a man named Reg Argue. Put it all out there. Are you familiar with those shows?

N. Simons (Chair): I’m familiar with co-op radio shows. I’ve been on them, yeah.

W. Pidgeon: Were you familiar with that particular series?

N. Simons (Chair): No.

W. Pidgeon: Well, the grief that we got from that and the response we got from the RCMP over that — not acceptable. There’s a lot of baggage around this story and a lot of baggage around that Maples. When I start sharing stuff…. How do you deal with a staff member who punches kids in the head, and they promote him? How do you deal with a psychiatric nurse who was driving kids to their drug dealers? She got a parking ticket in her own vehicle in front of the drug house, and I have one of the kids in the vehicle who’s wanted to testify for years. And here we sit. It’s that simple.

Now, I know, Ronna-Rae, you were at the Mission budget meeting, and nobody asked me any questions there. In fact, no one was allowed to interrupt. Nobody was allowed to talk. That was the rule of the budget meeting. So when I left, nobody came and talked to me. During the whole day that I was there, off and on, a lot of people were approached in that room. A lot of people were taken to a corner and talked to. No one came near me.

This is on the record, Hansard. It’s the public record. I’ve done my due diligence repeatedly. And the law clearly states: if you know of a child being abused…. A guy with my background, and I don’t know what I’m talking about? You were a social worker, Nicholas. You have a real good understanding of this. Some people were never social workers, so they ask a lot of questions, and they make statements like: “I’m a little slow.” I heard that statement today. I can’t tell you what time that happened, but the Hansard notes will show it.

I’d sure appreciate it if somebody would stand up and do the right thing. You’re smiling, so I guess you appreciate me being here, Nicholas.

[4:40 p.m.]

N. Simons (Chair): I do. Thank you very much.

W. Pidgeon: There you go.

N. Simons (Chair): I’d like to make some closing remarks, if I may, to committee members and to all of the people who have testified before this committee over the last number of days. I have to say we’ve heard some extremely compelling stories, heart-wrenching stories, stories that have made us think and have made us feel. I think the witnesses who have spoken to us have done a very good job of informing us of the situations that they face, the challenges that they have to endure.

My hope is that as we deliberate together in the next number of weeks, we will come up with some possible suggestions to make to government to improve not just the lives of the families but the well-being of our entire communities.

I recognize the heaviness that can come with some of these stories, so as a colleague, I thank members of the opposition, members of government. And I thank all of those who’ve listened to the stories and who have felt what they have heard. Thank you for your service, and thank you for participating in this very important project.

With that, I adjourn the committee.

The committee rose at 4:41 p.m.