The committee met at 3:02 p.m.

Election of Chair and Deputy Chair

S. Sourial (Clerk Assistant, Committees and Interparliamentary Relations): Good afternoon, everyone, and welcome to our first meeting of the Select Standing Committee on Children and Youth.

I want to acknowledge that I’m speaking to you from the Legislative Assembly of British Columbia and that we are on the traditional territory of the Lək̓ʷəŋin̓əŋ-speaking people, the Songhees and Esquimalt First Nations. I would also like to acknowledge, with respect, the long history, culture and wisdom of all British Columbia Indigenous People, including the Inuit and the Métis.

As this is our first meeting, the first order of business is to elect a Chair. Do I have any nominations?

F. Donnelly: I’d like to nominate Jinny Sims for Chair.

S. Sourial (Clerk Assistant, Committees and Interparliamentary Relations): Thank you, Fin.

Jinny, do you accept?

J. Sims: Okay.

S. Sourial (Clerk Assistant, Committees and Interparliamentary Relations): Any further nominations? Any further nominations? One last time, any further nominations? Seeing none, all those in favour?

Motion approved.

S. Sourial (Clerk Assistant, Committees and Interparliamentary Relations): Congratulations, Madam Chair.

[J. Sims in the chair.]

J. Sims (Chair): Thank you.

I’m looking for someone to nominate for the vice-Chair. I’m in the chair, so I can’t nominate Coralee. Otherwise, I would.

K. Kirkpatrick: I’ll nominate Coralee Oakes.

J. Sims (Chair): Thank you, Karin.

Coralee, do you accept?

C. Oakes: I accept.

Thanks, Karin.

J. Sims (Chair): You know, what a hard-fought election. Congratulations. You are now the vice-Chair. Thank you.

Just for the benefit for everyone, when we get the report today, there are going to be a couple of families who are going to be giving their perspective. My request, not direction, is that if you have a specific question for them, please feel free to ask, but let’s not get into discussing the report or its parameters or its findings. That we will do after. We are scheduled to go from three to five.

I do have a family emergency that I may have to leave the meeting for, but I will give everybody five minutes no­tice when I have to go, and then Coralee will take over the chat. I just wanted to give you that as a heads-up. It’s something I cannot avoid. I absolutely have to.

Thank you. I really appreciate it. We can now let in our guests.

[3:05 p.m.]

Welcome, Jennifer and your amazing team. I just want to say our apologies. We kept you waiting for a few min­utes, but we had to go through the process of re-electing our chairs again. It seemed like only yesterday we did it, but we did have to do it again today. I always find these elections a bit of a pro forma, but that’s just the way it is. Thank you for waiting.

I’m going to hand it over to you. What I have shared with my team is that you do have a couple of families who will be making presentations. If they have specific questions for the family, they will ask. We will have a general discussion after the families have left.

Consideration of Representative
for Children and Youth Reports

Excluded: Increasing Understanding,
Support and Inclusion for
Children with FASD and their Families

J. Charlesworth: That’s fantastic. Thank you so much, Chair. It’s so lovely to see all of you and to share this report.

I want to begin in a good way by acknowledging I am on the traditional and unceded territories of the W̱SÁNEĆ people in the area, also known as Saanich.

I want to invite you to take a look at our checkerboard here. Maybe I can just ask our team, as I read out your name, just to do a little wave.

I am joined this afternoon by the RCY staff deputy representatives, Samantha Cocker and Alan Markwart, as well as Pippa Rowcliffe, who is RCY’s executive director of monitoring. Also here to share details of the report are the two co-leads. Sarah Levine is with the RCY as a senior project lead on our monitoring team, and Myles Himmelreich also served as co-lead and co-researcher on this initiative.

We are joined by parents Bonnie McBride, Leona Kamp­man and Deanna Jones. These are three of the families who participated in the research for this project.

I wanted to speak briefly about what the flow is going to look like, just so that you know. I’m going to speak for a bit about the report, sort of give you a sense of the context of the report. Myles will speak, and I’ll introduce Myles a little bit more, in a minute or two. Then we’ve spoken with the families, and they each have something unique and very important that we hope you will be inspired by — both the challenges and the strengths; the resilience, the creativity; and the hope and the promise of if we can provide the supports for our children and youth, then thriving is a possibility.

I think their remarks — each of them will take four or five minutes — will really flesh out the report, from our view. And then welcome to receive any questions — we’re all ready for that — to the families and Myles. Then they will stay on, just because it’s a public process, and they will just listen in. Then you can direct all of your hard questions to me. We’ll do it that way.

I really want to thank the parents and others for agreeing to be part of the research and for allowing us to get a glimpse of what day-to-day life is like for the children and themselves, as parents. They showed us both tremendous strengths and the challenges that they face. Gratitude to our three parents, because we certainly couldn’t have done this report without you.

I also want to thank Myles. Not only does Myles bring this delicious, wonderful humour and wit, but his work and perspective are particularly important to this project as somebody who has FASD himself and is a person with 15 years experience working to increase awareness and understanding of the disability. Myles brought tremendous knowledge and lived experience to this project and played a key role in both informing all of our work and in helping to bring forward a clear understanding of the strengths, resourcefulness, creativity, kindness and love that the children and families who were part of our research embodied.

You have a sense of the plan. Let’s dive in and talk about what Fetal Alcohol Spectrum Disorder, or FASD, is. It’s a lifelong disability that’s often misunderstood and accompanied by significant stigma for those affected by it. What we aimed to do through this project was to illuminate the experiences of children and youth with FASD and their families, and through those experiences, offer insight into how they can be better supported through assessment, diagnosis and in their day-to-day lives.

[3:10 p.m.]

As we mention in the report, one of the great challenges for RCY was to do this work without reinforcing the stig­ma often attached to FASD, including the false framing that FASD is an Indigenous problem and that it’s 100 percent preventable. Those are very harmful stigmas and stereotypes. Both of these stereotypes tend to result in blame and shame for the mothers, families and communities without giving consideration to the multiple factors that can contribute to fetal exposure to alcohol, which is what leads to the disability.

To be clear, FASD is not a diagnosis that’s specific to a particular population or group of people, nor is it necessarily the result of a woman knowingly consuming alcohol while she is pregnant. However, it’s often stereotyped as either or both. There’s too often a lack of empathy and understanding about FASD and way too often a lack of supports and services available to children and families. Fostering a better understanding of FASD and spurring improvement to the supports and services for these kiddos and their families so that they’re on the same footing with children who have other disabilities is the biggest impetus for our work.

Let’s talk about the research. We used a mixed-methods approach to gather and analyze the information, including ongoing and extensive engagement over many months with nine children and youth with FASD from across B.C., as well as their parents and caregivers.

Before the pandemic, our researchers visited these families twice in their communities to better understand what daily life is like for them. That’s Myles and Sarah. We conducted extensive interviews, and both the young people and their caregivers kept daily self-reflection logs. Cameras were provided to the children and youth, and the resulting photos they took were used to co-create life books that included their writing and other items the young people felt were important in their lives.

We also broadened our information to interviews with 48 professionals and service providers working in the field. We reviewed our injury and death data for children and youth with suspected or confirmed FASD that were reported to the RCY over a 16-month period. We held dialogue sessions involving families and service providers and leaders in three distinct B.C. First Nations, and another with urban Indigenous participants. Some of those gatherings had close to 100 people.

An extensive literature review was done. That was guided by the themes that actually emerged from RCY’s work with the families. The themes came up, and then we went into the research to understand, and then we had external subject-matter experts, including researchers and people who have really done extensive work in this area, to guide us.

We also hosted a forum for key decision-makers in Oct­ober of 2019. It brought together participants from a number of government ministries, health authorities, First Na­tions organizations, as well as this committee. The committee was represented at the gathering, actually, by for­mer Chair Nicholas Simons and co-Chair Michelle Stilwell.

That was a full day, actually. In the morning, the young people did skits and simulations and activities with the senior decision-makers — deputy ministers and assistant deputy ministers and senior leads — to invite them to understand what FASD was. In the afternoon, the kids went off and had some fun, and the decision-makers spent time with the parents and caregivers, and then we went into collaborative action tables. All of this was a way of trying to understand and look, from many different perspectives, at what is going on here.

What did we find? We have already alluded to the most important finding in our work. Supports and services for children, youth and families with FASD need to be im­proved and made more accessible. Our research made it very clear that the supports for children and families with FASD are meagre. They’re paltry compared to those children and youth who are living with other special needs.

You already know from work that we’ve brought before you that that’s not saying much, because there are lots of kids with special needs that aren’t getting the supports that they need. But if you take a look at the full range, FASD has, from our perspective, the least number of supports.

[3:15 p.m.]

We repeatedly heard that this comparative lack of services is a direct result of MCFD’s children and youth with supports needs, or CYSN, their eligibility criteria that’s based on diagnoses rather than functional needs and where they have not included the FASD diagnosis as one of those that’s defined as within their special needs service delivery model. Basically, what that means is that children and youth and families living with FASD can, and do, slip through the cracks of almost every program stream that there is.

This report shows that many services focus on providing support to children and youth based on their diagno­ses and narrowly defined eligibility criteria, instead of on their needs. On many occasions, parents and community members described to us, to the researchers, how other children and youth with similar developmental, behavioural and functional needs — so they might look and present the same — were able to access services because they had a diagnosis that fulfilled the eligibility criteria, while their own child was excluded from receiving supports. Bonnie will speak a little bit about that, too, of how dependent supports are on diagnoses.

Key workers, clinicians, community dialogue partici­pants and other service providers also expressed their frustration at the inequitable distribution of services. As a key worker said: “Families can access a whole range of services when their child has a diagnosis that opens that door, and FASD isn’t one of those diagnoses.”

The very first report I released as the new representative, in the fall of 2018, was entitled Alone and Afraid: Lessons Learned from the Ordeal of a Child with Special Needs and His Family. It found the system of services and supports for children with special needs sorely lacking and recommended comprehensive improvements. Building on that, we released the report that we brought forward to you, Left Out: Children and Youth with Special Needs in the Pandemic. It, too, showed that services for B.C. children with special needs remain seriously inadequate.

Today’s report is the third that speaks to this area but focuses on FASD and speaks about the inadequacies of the system overall. Within FASD, those families and children often struggle to get any tangible help. As a result, I recommended, as part of the Excluded report, that the provincial government take both immediate and long-term action to improve those services. In the short term, MCFD should make children and youth with FASD immediately eligible for family support services, which could include access to a CYSN worker, respite services, case management, behaviour supports, parental skills training and support groups, among other things.

We also called on MCFD to take immediate action to ensure that the key worker and parent support program — which is the only generally available ministry-funded FASD-specific support, very meager — provides consistent, quality service across all regions of B.C. and make it accessible to all families of children and youth with FASD. In the report, you’ll see the strengths of the key worker and parent support program but the significant limitations of it in terms of access, consistency of services, etc., quality and preparedness to provide what’s needed.

In addition, we said the ministry should implement and fully fund its long-awaited new CYSN framework, which allocates services on the basis of assessed functional needs rather than just diagnoses, and ensure that this framework fully includes a comprehensive range of services and supports for children and youth with FASD. We’ve been hearing for a long time about the framework. It was mentioned again in the budget speech this week, but no money is attached to that, and it’s in the future, not to address the immediate needs that we’re seeing.

As a postscript to this report, I must add I was deeply disappointed, as I’m alluding to, that this week’s provincial budget did not include a significant increase in funding for children and youth with support needs, leaving MCFD with scarce resources to implement these latest recommendations and, in fact, the recommendations back to 2018, and its long-awaited promise to implement its CYSN framework.

I should also mention that this previous iteration of this committee…. Your folks did work on this subject, as well, and spoke to the need to transform the system of services so that it’s based on an assessment of functional needs instead of simple diagnosis. You included in that those with FASD. There are now, if you include that, four reports all speaking to the same need. As this report indicates, and as you’ll hear from Myles and from the parents with us today, such service realignment and investment are sorely needed.

[3:20 p.m.]

I want to pick up another piece that came up for us, and that was structural racism. Our report found that structural racism towards First Nations, Métis, Inuit and urban Indigenous People appears to lead to assumptions that can influence the referral and assessment processes and pathways for FASD and other disorders.

Clinicians and service providers involved in the proces­ses of assessment and diagnosis described to us — so these are the clinicians describing to us — a noticeable trend of Indigenous children and youth being referred for FASD assessments, while non-Indigenous children presenting in a similar manner, similar kind of behavioural characteristics, are more commonly referred for other assessments, including autism spectrum disorder or attention deficit hyperactivity disorder.

Participants in the First Nations dialogue recounted similar experiences, saying that racist stereotypes about alcohol use in general can skew Indigenous children to­ward referral for an FASD diagnosis or assessment, or assumptions about FASD. These observations are also reflected in the research literature and in the researchers that we consulted for this.

We actually sought data from the Ministry of Health and MCFD to explore the issue of racial bias in referrals for assessments of FASD and other conditions, but the provincial government doesn’t collect the disaggregated data required to do this. We’ve talked around this table before about how critically important it is to get this disaggregated data, to understand what’s happening for our children.

Nevertheless, all available indicators, gathered as part of our research, point to the troubling conclusion: FASD continues to be falsely framed as a predominantly Indigenous issue, and this framing affects the referral process for assessments. As a result, I’ve recommended that the Ministry of Health take steps to examine the systemic bias with regard to referral pathways for FASD and other assessments and make necessary changes and improvements resulting from that work.

We’ve also recommended that the ministry conduct this work in collaboration with the First Nations Health Auth­ority and with guidance from the task team formed as a result of the In Plain Sight report into systemic racism that was released in December.

As I have previously mentioned to you, FASD is often claimed to be completely preventable and a message that supports the narrative that FASD is solely the fault of biological mothers. This dominant public discourse ignores systemic factors that can contribute to birth parents’ use of alcohol — for example, past experiences of trauma that have gone unsupported.

It also disregards the common instances of alcohol use by women before they’re even aware that they are pregnant. The narrative about it being completely preventable perpetuates false and harmful stereotypes that our resear­chers were repeatedly told affect the way children and youth with FASD and their families are treated and, ultimately, the services they receive. In fact, some community dialogue participants referred to FASD as “the loaded diagnosis.”

The stigma and lack of empathy experienced by families with FASD are accompanied by a general lack of understanding about the effects of FASD and how it presents. It’s an invisible disability, and this lack of understanding can lead to exclusion from community and peers and social isolation for children and parents.

This report also found that FASD assessment and diagnostic process is incredibly complex and resource-intensive; that children and youth with FASD are not sufficiently supported in the public school system, often leading to their exclusion from education; and that children and youth in government care who have FASD may not receive a diagnosis or proper supports and that they can face significant hurdles with limited supports as they enter into adulthood and transition out of care.

We have a few other recommendations.

To both MCFD and the Ministry of Health, review and improve their FASD awareness training for appropriate staff working with children and youth with FASD. You will hear stories of gross misunderstandings and the harm that that causes.

That the Ministry of Mental Health and Addictions collaborate with other ministries to develop and implement a plan to provide effective and accessible mental health services for children and youth with special needs. We often see the co-occurring FASD and mental health challenges, and that’s not addressed in the Pathway to Hope.

That the Ministry of Health make real progress in reducing wait times for completed assessments of autism and complex behavioural conditions. We called for that two years ago, and I can tell you that in most cases, the wait-lists and the timelines have increased, not decreased.

[3:25 p.m.]

That the Ministry of Education update its inclusive education policy to increase awareness and understanding of the specific learning needs of children and youth with FASD and work with partners to support staff training and development needs for educators and school staff who work with young people with FASD, or suspected FASD, and their families.

Finally, we recommended that MCFD collaborate with the Ministries of Citizens’ Services, Mental Health and Addictions, Social Development and Poverty Reduction and Education to initiate the development of a cross-ministry plan to routinely correct high-quality demographic and service data that allows for that disaggregation so we really can understand who’s being served, who’s not being served and what some of the things are that we need to pay attention to, to better inform decision-making and planning.

The last recommendation is, as I have said, very important because we were unable to gather much of the data that we felt would’ve helped us to really assess the bias, the systemic and structural bias, in referrals, in treatment, in care. Of course, that’s a recurring issue that I’ve brought before this committee before.

We also requested data on the key worker and parent support program as part of this research, but MCFD does not collect data on the children and youth served by this program. The one program that there is for FASD we don’t know anything about who’s being served or what’s happening, how long they’re being served, etc., or what kinds of supports are being provided. That key worker program, by the way, is for the family members. There’s nothing that’s actually directly offered to children.

The other thing that’s important is that the key worker program standards haven’t been updated in 11 years, and the program has not been reviewed or evaluated since 2008. So the lack of basic data, oversight, evaluation and review of standards, for me, is very troubling, and it re­flects a lack of focus on helping children and families with FASD. That simply has to change. The first step towards improving anything is to understand where you’re starting from, the baseline, so we need that better disaggregated data as well as evaluating what is happening and what the outcomes are.

In conclusion, problems with how children and youth with FASD are supported in B.C. are not new. Twelve years ago the B.C. government released a cross-ministry plan entitled Fetal Alcohol Spectrum Disorder: Building on Strengths — A Provincial Plan for British Columbia, which was to unfold between 2008 and 2018. I could’ve written those recommendations in 2021, same recommendations.

One of the goals of that plan was to ensure that “people living with FASD are supported to reach their full potential in healthy and safe communities.” And a strategic objective called for “children and youth and adults living with FASD and their families and support networks to have access to comprehensive and lifelong intervention and support.” Clearly, we have a ways to go.

As I mentioned, the reports released by this committee emphasized access to supports as well. We’ve done Left Out and Alone and Afraid. So this is not new.

It’s long been known that children and youth in families with FASD need more and better support. We’re hoping that by bringing another focus and a very specific focus to FASD, and with your support as champions, we really are wanting to encourage not just a single ministry but a broader awareness and understanding across that whole-of-government approach. That’s necessary, whether we’re talking about preparation of the workers — and child and youth care social workers, nurses, pediatricians, etc. — through to the specific supports that are provided in education for children in schools and then, of course, family supports and wraparound supports for birth mothers, etc.

We are talking about a whole-of-government approach here. It can make a phenomenal difference. The stories from the young people and the way in which they engaged and the strength were inspiring. So I have great hope that by addressing the challenges that these young people and their families experienced, we’ll see children with FASD not just survive, not just make it through, but actually thrive, realize their full potential and contribute substantially to the communities in which they live.

Thank you for listening to me. That gives you the broad strokes. I’d like to pass it over to Myles for his reflections and comments. Then I’ll kind of help and manage the voices of Deanna, Leona and Bonnie as well.

[3:30 p.m.]

Can I just say…? I just want to acknowledge it. Thank you so much for leaving your videos on. Myles and I were talking about just how helpful it is when he can see folks, so thank you very much. I just want to acknowledge and appreciate that.

Over to you, Myles.

M. Himmelreich: Thank you, Jennifer.

For everything Jennifer said, I found myself going, “Yep, yep, yep,” so I could just go, “Exactly what Jennifer said; thank you,” and pass it on, but I will share a few things with you.

I just want to, first off, say thank you so much for the opportunity to connect with you today. It’s an honour to be involved in such a great and amazing project, something that I really believe in, and I’ll talk a little bit more to that in a minute here. But to have the opportunity to have people listen and hear our voices…. And speaking on behalf of my people, the ethnicity people…. No. But speaking as individuals with FASD, I think this is where there’s been a disconnect.

For years, we have spent time at conferences and, you know, doing different things, and it’s a matter of: “Okay, so this is what they need. This is what they should do.” Right? It wasn’t until not so long ago that people started realizing that instead of saying what I need or what I should do, talk with me, because I may have some ideas too on what works or doesn’t work, right?

I’m a strong believer in “Nothing about us without us” — including us in the work, including us in the campaigns, in the training, all of those things. So having the opportunity to be a part of this project meant a lot to me, because not only was I able to bring in my personal experiences but my professional experiences as well. And being able to connect with the young adults and their families was so amazing, because we had those times and those opportunities where you’re sitting across from each other and you have a similar experience, or you feel a similar way, or you’ve been labelled a similar way.

To see that in somebody else and have that sense of “I’m not the only one” is so powerful and so amazing. The one thing that we did find with all of these young adults that we worked with was the energy — not just physical energy, running around, but also their energy and passion for life.

We talk about the fact that people fall through the cra­cks in the systems. I challenge that, because it’s not a crack if there’s not another side to step on. That’s a cliff. When we look at FASD and at programs and supports and agencies, they’re very hard to connect, because to acquire supports from these agencies, you usually have to have an IQ below 70.

Now, in a recent study that we’ve done this year with over 400 adults from all over the world who had diagnosed FASD, out of those 400, only 26 percent replied back with having an IQ under 70. So that leads to the question of: where do the other 74 percent go when they can’t access these programs because their IQ isn’t low enough?

This is something very common when it comes to FASD. Our IQs are over 70, so we are not able to access these things. And the parents and caregivers can really speak to the fact of trying to find different places — you know, calling this agency, calling that program, right? Trying to find where FASD fits to be supported. And it doesn’t. It’s the leading disability in lack of supports and funding. And that’s where things really need to be changed.

We even look at…. CanFASD delivered a report, Canadian FASD, and they said that there’s approximately $1.8 billion that is needed for FASD, and the second-highest contributor for that cost was corrections, the justice system. We hear that all the time. We’ve heard that for years at conferences that our correctional systems are filled with people with FASD. We’ve heard numbers as high as 80, 90 percent.

[3:35 p.m.]

Whether that’s true or not, I can’t say for sure. The stats are all different everywhere. But the thing is that I can tell you that if we take the time to put the supports and the financial funding supports in place for individuals with FASD at a much younger age, I can guarantee you we won’t have to be putting them into the correctional system, into the court system, into those places, because we’ve now started to find a way to support these individuals so that they can have a purpose, a sense of purpose and belonging. That’s all anybody wants.

When it comes to FASD, it’s routine, repetition and a sense of belonging. Where do I fit? What’s my purpose? If we look at the educational system, it does not work. Society says you’re supposed to go to this grade and go up and learn and be at these certain steps. If you’re not there, you’re either just pushed there, or you’re left behind.

I was not ready for school until I was, honestly, probably about 22, 23 years old. At that point, I thought to myself: “I think I could actually go to junior high and actually learn and understand and remember things better now.” Developmentally, I was ready then. I wasn’t ready for the first 16, 17 years of my life. I wasn’t ready for that. But that was a loss, because society did not structure it in a way that was supportive for me. Then I struggled with maintaining jobs because the same issues that were happening in school translated to the work field.

By putting those supports in place, by allowing individuals the opportunity to stay home with their parents and caregivers…. By offering that financial support so that their child can stay home longer, by helping out with independent living…. Maybe that means they have their own place, in a basement suite or two houses over. So I can bring my friends over and say: “Hey, this is my place.” But then I can also go to my mom and say: “Hey, are you going grocery shopping on Thursday? Because I could go get some food.” Having those supports in place and not feeling that I’m left alone in those supports. Putting those supports in place at a younger age would make a huge difference.

If we actually look at the fact that in our city, our pro­vince, our entire world, we’re facing a pandemic called COVID-19, this is something that affected all of our day-to-day routines and our structure. It is something that’s misunderstood, and it’s something that requires proper awareness, education, financial support and correct information.

Also, if we look at our city, our province, our entire world, currently we are facing another pandemic called fetal alcohol spectrum disorder. This is something that also affects our day-to-day routines and structures. This is also something that’s misunderstood, and this is also something that requires proper awareness, education, financial support and correct information-sharing.

One of the things that I loved about being able to be a part of this project was that, as Jennifer spoke to earlier, we’re not looking at this, going, “Well, it’s 100 percent preventable,” or saying that there’s all the shame and blame directed towards mothers, and this makes individuals victims who suffer.

There has been so much time and money put towards prevention, and I’m not saying that prevention isn’t im­portant. It is. But what else is important is each and every one of these individuals in this project and the fact that their future is not being thought of because we’re focusing on: “How do we stop FASD? How do we get to a world where we don’t have that anymore?” When I hear things like that and I see campaigns like that, it really makes me wonder: what’s wrong with me? Why wouldn’t you want me in this world?

In this report, we decided to look at how we can support the individuals that have FASD now. FASD is going to be around forever. It’s been around forever. Why are we just pushing it away and saying: “Let’s get away from this”? Why are we not supporting each and every one of these young adults in this report?

[3:40 p.m.]

I can guarantee that that $1.8 million that goes towards FASD — each and every one of these kids in this report is worth every cent of that. You’ve got kids in this report…. One of them was bullied, picked on, made fun of. Teachers were not supporting him. He went home, told his mom this and then said: “I want to write a letter about FASD so that they can better understand me.” That is amazing.

Another one said how she received all this paperwork when her child was diagnosed with one disability but that when her child was diagnosed with FASD, she received no­thing in regard to supports and things like that. Then she shared with us, with tears in her eyes, how hard it was that she felt she was turning on our field of FASD by accessing supports from other places.

We obviously know and understand that she wasn’t. She was doing what she could to get those supports for her child. But should she have to feel like that? Should we have to say: “Well, we’ll go down the path of ADHD or autism to get funding, because if we acknowledge that they have FASD, we’re not going to get anything?” That’s not right; that’s not fair. That needs to change.

I just really wanted to say I really appreciate being part of this report. I really appreciate the fact that going forward, we are wanting to put in steps to make actual changes and that it’s not simply just a nice report that was written up. We heard about that ten-year cross-ministry report that happened, right? I can say, honestly, that not a lot of things have changed in the ten years since that money was given and that report was done. Here, this is a report that was done, but also it’s offering opportunities to go make those changes to the health care field.

FASD is a whole-body diagnosis that affects every bone, tissue and muscle in our body and is breaking our bodies down at a younger age and a faster rate.

FASD affects the justice system, because developmentally, we’re putting children out on the streets and holding them accountable to that of an adult.

It affects our education system, because they are not understood and not supported properly. It affects all these areas. So all of these areas need to be supported in making change.

I just want to say thank you for the opportunity to speak to you today. Thank you for being with us, as a team, to make this change.

J. Charlesworth: Thank you. That’s wonderful, Myles.

I told you that Myles was going to blow your mind.

Now we have three other beautiful humans that will also add to your knowledge and understanding. How this is going to look is we’re going to do it in a bit of a flow. Bonnie McBride will introduce herself and share their family’s experience. Then we’ll go to Leona and to Deanna.

I will say that folks are feeling a little bit anxious, but we told them that you didn’t bite, and you can’t bite, because we’re on Zoom. Just really looking forward to the opportunity to share. A couple of folks might have written out their material. Just so that you know, they’re really excited to be here but also a little bit anxious. Let’s support them in a good way.

We’ll start with you, Bonnie.

B. McBride: Thank you, everybody, for an opportunity to meet with you this afternoon and to further the work that our family has invested in with the Representative for Children and Youth and her team. It has been a really great experience for us.

I am a parent; my daughter’s name is Sellene. I will tell you that I share her name and our story with her permis­sion. Sellene has been a self-advocate and has spoken na­tionally, provincially and locally on the importance of understanding FASD since she was seven years old. She’s happy to share her story, so I’m not giving you any information that she doesn’t know I’m going to share today.

[3:45 p.m.]

Sellene came to our family at ten months old when we began doing respite for her grandparents who had taken her home from the hospital. Her mother is fully street-entrenched and used alcohol throughout her pregnancy. The gift that she’s given Sellene is the gift of honesty. Unlike many families, we’ve never had to chase a diagnosis. We assumed a diagnosis of FASD at the beginning, and we didn’t let anybody move her away from that diagnosis. We never wavered from saying that she had special needs.

What’s interesting about our family…. Because we have a short amount of time to talk to you today — I would love to tell you all the great things about Sellene and about our family — I’m going to talk to you about the exclusion of inclusion. With the short amount of time, I think that that’s the message you need to take back to your co-workers and your peers — that there is a desperate situation of exclusion within our definition of inclusion and our programming.

Sellene and our family are at what’s called the pinnacle of support. So there is nothing left for the province or for our community to give us in terms of food security, in terms of housing security, in terms of financial security, in terms of education or any of the other sorts of programs that come in — those wraparound services that we offer families when we have crises.

Sellene has attended the same preschool, the same scho­ol. She’s had the same pediatrician, the same psychiatrist, the same parents and the same support services through her whole 11 years of life.

Yet we have had interactions with child and youth mental health, with the RCMP. She has been admitted to the psychiatric unit at our hospital, including six hours in an adult emergency psychiatric unit in our emergency room that was probably the most traumatic experience of my life. She has been excluded from school. I have spent most of my last decade advocating professionally in order to have Sellene live a happy, healthy, peer-supported, community-involved life. It’s all that I do.

Sellene’s diagnosis of FASD came to us at five years old — her formal diagnosis. She was diagnosed at four with ADHD so that we could get enough medication that she could safely attend school with a class of 20, because at that point, she couldn’t have attended safely otherwise. We have, since then, struggled to engage in the things that Sellene wants to do.

Our plan for Sellene is driven by her. If she wants to try something, then we make it happen. If she wants to be in community programs, then we work hard on making that happen. It’s not possible for us to do that based on the supports we receive because she has FASD. Because we have a diagnosis, as well, of autism, because we are an adoptive family who carefully crafted post-adoption support for her in order to have her come into our care permanently and because we foster her three younger siblings — so we’re currently an active foster home — we have been able to engage enough services and supports to keep Sellene here in our home.

Even with all of the things we have done, we have still been in a position where we have been offered the opportunity to move her into ministry care. We have been asked to pull her out of school and school her at home. We have been told she would be a candidate for residential programming. My daughter is 11, and those are the things the province has offered us in order to keep her healthy and safe.

In our community, a lot of the programming that’s available for kids with special needs is funded through child and youth with special needs. That CYSN programming, in addition to setting a family up with a social worker and opportunities for the at-home program, opportunities for respite and opportunities for education, also funds community programming.

[3:50 p.m.]

A lot of the social service organizations that work in my community have monthly social clubs. They have subsidized summer camps. We have opportunities for therapeutic riding. All of those things. But because my child has a diagnosis of FASD, not only can she not access CYSN services; she can’t access any of those programs either.

My takeaway to you is that if that structure for CYSN accessibility and eligibility is not going to change, then we need a whole different set of people at child and youth mental health or at Ministry of Children and Families or child and youth with special needs that is specific to FASD. If it’s not going to come out of that pot of money, it’s got to come out of another one. And we need a director of research and services for FASD in B.C. — period.

That needs to happen immediately, because if we can’t do it, I don’t know who could do it. We are power advocates, and there are no barriers to us keeping Sellene in our home. There are just not enough supports.

J. Charlesworth: Thank you so much, Bonnie.

Welcome, Leona.

L. Kampman: Thanks. I have written it out. so I am going to read it to you.

My name is Leona Kampman. My mom, Alida, and I love, support and raise three wonderful individuals who have FASD. Why this report matters to my family is that individuals with FASD, their families and those supporting them have to wade through very murky waters living in our society in B.C.

In every system we have dealt with, we have experienced lack of awareness, support and policies surrounding FASD and, in turn, have received ineffective and harmful, damaging treatment. I hope the RCY report brings much-needed change and awareness for the need of policies and practices, systematic change and accountability to the systems in B.C. that are meant to support those living with FASD.

As a parent, I have spent a lot of time and effort advocating for my children. A lot of this advocating involves educating those who work with my children about FASD and why they need support. Many times it feels like I’m repeating myself over and over and always ending up with the same result, which is a lack of understanding, little or no support, ineffective or ill-informed support. In every system, it feels like you are at the mercy of who you get to work with and their understanding and knowledge of FASD.

Parents should be able to be just that: parents. When parents are educating and struggling with systems meant to support their children, it takes away their time and effort that would be better spent supporting their children. No matter how well-meaning and good intentioned people are that are working with individuals with FASD, if they are not FASD-informed and using FASD-informed practices, they are and will do damage to them and their families.

I just wanted to be, and be my kids’ mom. All the energy and time that the systems have taken and will take from us by them being misinformed, uneducated, underfunded or not funded does have an impact. Systems that are meant to be helpful are actually hurting those living with FASD.

A couple of thoughts I would like to leave you with — why I’m speaking more to this is that I have children that are transitioning into their adult world — are just some of the obstacles that I see. I just don’t understand why individuals with FASD do not get the same types of supports as anybody in our society. Why do typical students get pathways set out for them? Schools have pamphlets, booklets. “You can go here. You can do this.”

Our children don’t fit in that criteria. We have to find creative solutions. Creative solutions equals time-consuming, frustrating, a lot of noes — no funding. We get told a lot that we have to live in the real world, and the real world — I’m going off-script a little bit here — is kind of like what Myles said about not developmentally being there yet.

[3:55 p.m.]

When my kids started transitioning into middle school, I got a lot of comments. “You know, it’s time for you to back off. It’s time for you to let them grow up.” Well, they’re not there yet. “They need to take accountability. They need to live in the real world. How are you going to let them go and fly at grade 12?” We get a lot of: “We have to live in the real world.”

We get told a lot: “We can’t do this for everybody. This is not the way that the world works. This is not the real world.” I get left wondering: whose world are we living in? Are we living in their world or your world? I can understand where Myles’s frustration is if they’re just not developmentally ready. I do see that as a parent.

I was just wondering why our children can’t have a clear path based on their developmental path.

Another thing is, if you look into the CLBC booklet, you see that there is support for individuals with FASD. As a typical citizen of B.C., looking at it, you would think: “Oh, great. There are supports for those with FASD.” Then you’d go about your business, thinking that we in B.C. are looking out for those affected by FASD. But in actuality, this is not the case. I think this is a bit of a smokescreen, because most individuals with FASD struggle with accessing it.

We in B.C have to do better. I am hoping, with this report, that our systems will now know better, so we will do better. We can no longer rely on people working with individuals with FASD to be well-meaning, well-intentioned and to just get it. We need to support them with policies, education, practice, funding and accountability so our children can get the support they are entitled to and deserve.

J. Charlesworth: Thank you, Leona.

Deanna.

D. Jones: I am going to read to you today. I’m super nervous, so I wrote down what I was going to share with you. I am Deanna, and I am the lucky mom to one of the amazing young people that got to share their stories for this report.

My son Dawson was diagnosed with FASD at five years old. I remember that day so well, leaving the feedback meeting overwhelmed and uncertain about what all this meant, exactly. We had been working with CYMH prior to this diagnosis. That afternoon, I phoned the clinician to let her know that my son had been diagnosed with FASD, and her response was completely unexpected. “Deanna, we will no longer be able to work with you anymore. We’re closing your file. Connect with a key worker.” I’m like, whoa, what’s going on here?

I was shocked. Do you mean to tell me that my boy with debilitating anxiety, causing panic attack seizures, was no longer receiving mental health services because he had an FASD diagnosis? I knew at that moment that we were going to have a long road of advocating ahead.

We have since received CYMH services several times, but the amount of advocating it requires to get services is exhausting. When we heard about the research being done for the report, both my son and I knew that we wanted to participate and bring awareness and understanding of the inequality of services amongst children and youth with special needs.

Throughout the years, we have had some really positive experiences, seeing how certain supports and services can be so beneficial. But we have also had many heartbreaking moments when doors are repeatedly closed to services that we know would be helpful but that we can’t access for various reasons.

The piece that my son and I hope that you all take from this report is that these young people want the same as most everyone: to be accepted, loved and included. There is hope when the right services and understanding are in place. This report shows that we can do better for the FASD community. Our young people spend so much time in school, and most recently, we have had the opportunity to see firsthand how an inclusive, needs-based education program can change a child’s life.

My son was slipping through the cracks in the mainstream public education system. My fun-loving, active boy had lost his spark. He was completely misunderstood and bullied relentlessly by the other children in his class. His anxiety was through the roof. Panic attack seizures had started again. He was picking his skin to the point of hospital visits for infections. He talked daily of hurting himself. His hoarding and collecting had become debilitating. He started attending school only four days a week, if that.

[4:00 p.m.]

I climbed the school district ladder, advocating and trying to find support and, at the very least, trying to figure out a way that my boy could attend school safely. We had given up on academics. No one knew how to get past the anxiety and teach him. Basically, he was just attending school to say he attended school.

My brave boy took it upon himself to educate a couple of the classes and several teachers in the school on FASD in hopes that maybe information would bring empathy and understanding. The presentation he did was incredibly moving. However, the bullying continued and got much worse.

As with every difficult situation, there are bright spots. We found a special ed teacher that advocated with every ounce of her being for my boy to get what he needed. After being on a wait-list for years, with lots of advocacy from all members of my son’s team, we were able to get him into a specialized school. The majority of the children in the school are all on the autism spectrum, but they agreed to take Dawson.

Dawson was heartbroken that it had come down to him moving schools. “Mommy, if I try a little harder, maybe the kids won’t think I’m bad. If we tried a little harder…. I’ll do better, Mommy, and the kids won’t hurt me anymore.”

The staff at the new school went above and beyond, picking up pieces of this traumatized kid. They offered services that the other children received with their funding to us at little to no cost, just to see him gain skills and be successful. We do copious amounts of advocating to get little bits of funding from any source we can and pay out of pocket over and over again.

I’m excited to share with you now that my sweet boy has almost stopped picking his skin. His hoarding and collecting have settled, self-harming talk has settled, and he hasn’t missed a single day of school this…. He talks about his future and post-secondary education now.

Is it perfect? Absolutely not. We have had our fair share of hiccups in the new school, and past trauma pokes its ugly head up repeatedly every day, but the positive outweighs the negative.

Dawson will struggle with FASD for his entire life. It’s just part of what makes him Dawson. But it just shows that with support and understanding, hope is possible. I worry about his future and what will happen when he can’t access services because I can’t pay for them and the tiny bits of funding that we find here and there run dry. For now, we take one baby step at a time, hoping that the recommendations in this report are explored further. Thank you for taking the time to hear our concerns.

J. Charlesworth: Thank you, all three of you, for sharing your families’ stories with us and illuminating what’s important to pay attention to — that we remember that we’re all doing this work because children are at the centre. I don’t know about you but….

Over to you, Jinny.

J. Sims (Chair): Before we go on…. I know how difficult it is, and I know how difficult it was for all of you to come and talk about this when it’s yourselves involved and you’re reliving your lived experiences that have caused pain for you and your loved ones.

I want to say kudos to you. I salute you for coming to talk to us and for sharing these experiences with us. On behalf of everyone on the committee, I cannot thank you enough for having the courage to come and tell your stories and have us see the real face of the impact of the policies and rules we have.

I’ve been a school teacher, most of you know, all my life, except for the last few years, and a high school counsellor. Having dealt with families, I know how painful advocacy is. You really are heroes, because being a parent is hard enough, but you take on that additional task of absolutely amazing advocacy. You’re doing it for your own child, I know, but you’re really doing it for all children. So thank you, thank you, thank you so much.

Back to you, Jennifer.

J. Charlesworth: Thank you very much, Chair. It gave me a chance for me to dry my eyes too. I think this has been a really, really heartbreaking journey that we have all been on. We have felt it very strongly because we see the impact on children.

[4:05 p.m.]

We have also got to meet these amazing young people through the journey. I look at Deanna and Leona and Bonnie, and I think about your children. It’s important that we remember that and who we’re in support of.

This is a great opportunity now for questions from the committee for Myles and the family members. We’ve just said that we will do questions and see what comes up, and we will see who can best respond. So open to you and the committee.

J. Sims (Chair): Okay. Thank you.

Susie, you go for it.

S. Chant: My question is towards you, Deanna. In finding school for Dawson…. Did you have any help in finding that? How did you manage to do that? How much support did you have in finding that school and accessing that school?

D. Jones: It’s a bit of unique situation because the school is one that is connected with the school district here in our city. It is connected with there, so we do use some chronic health designation funding to help pay for the school.

I found the school on my own. I was looking for other alternatives for him, to figure out what we were going to do and how, knowing that I couldn’t homeschool him. We accessed…. We got our name on this wait-list. Then, like I said, with all the advocating from everybody on my son’s team, she finally said: “Okay. Let’s give it a try and see if we can help this young man.” So it was a long, hard process to get him in. We had been on the wait-list for over 3½ years, waiting.

Because he doesn’t have all the funding that the other children have with their autism, I pay a parent portion. The other families don’t pay that. They do programs outside of that. I have to pay that out of pocket. Now that you know that these things work and that they are helpful for him, you just find the money. I don’t know. You just work harder and try and find the money where you can. That’s kind of how that whole piece came about. We are very lucky that we are where we are.

J. Sims (Chair): I’m going to go to Coralee.

C. Oakes (Deputy Chair): Thank you very much. My first comment is to Myles.

Myles, you educated me so much and have provided me so much to think about. I’m just grateful. I’m grateful for you. I am grateful for what an extraordinary individual you are. As a committee — Jennifer, I’m sure you and your team feel that way — how lucky we are that we’ve had you participate.

Some of the takeaway is just, quite frankly, how we think about things and the focus on prevention and what that makes you feel. And specifically, Myles, it is so critical in this report to understand how individuals with FASD are feeling. That you’ve helped educate and helped us understand that, I think, is going to lead to real steps of actual change. I’m grateful for that, because quite frankly, we have to do better. What this report has identified is that we are all responsible, and so much is needed. But I want to feel a celebration of how extraordinary you are and what you’ve contributed.

The other takeaway, and this is just to our amazing family members that have spoken: it shouldn’t be this hard. It shouldn’t be this hard for you to access the supports. I guess I did not realize how hard until, thank goodness, this report…. It’s unfortunate that it’s taken so many reports to identify how lacking in services there are. But you should be raising your children to thrive and to be all those…. A sense of belonging and thriving.

It seems…. I repeatedly hear how exhausting it is just to try and navigate a system that just doesn’t seem to have the supports.

[4:10 p.m.]

In reading this, I just asked, in my own community, a few people. I live in Quesnel, so Cariboo North, in the north. “What types of services do we have for families?” I was deeply surprised, and I can say that the people who work on the front lines feel terrible that they’re not better able to assist. They desperately want more support as well.

The final takeaway is…. I was under the impression that once you got a diagnosis, that would open the door. You look at the fact that here, you’re waiting years. In communities like in the north, you’re waiting multiple years, as parents, to try and get a diagnosis where you hope that that’s going to open the doors to supports that other children are accessing. And what I’ve heard from you is that it actually closes those doors. I just find that incredibly troubling.

I guess my question would be to Bonnie. I think it’s important to celebrate…. One of the things I really en­joyed about this report is the successes and the individuals and celebrating the individuals, how extraordinary they are. If you could just share with me, each of the parents, about your child, what makes them extraordinary and gifted, and what brings you joy. I think it’s important for us to understand that as well.

B. McBride: For sure. One of the most amazing things about Sellene is how she has the capacity to rise to every single occasion. She is such a peer support person. She’ll be the first one to raise money for somebody else. She’s all about Black Lives Matter right now, and she painted it all across our front window. She’s an advocate, in her heart. She’s quite well-spoken.

That’s one of the things I like best about her. For all the intensity and challenges and guidance that she needs, as soon as that moment arrives, Sellene has all the capacity [audio interrupted].

J. Sims (Chair): Thank you, Bonnie.

I’m now going to go to Jen Rice. I do have a speakers list. I haven’t forgotten anybody.

J. Rice: Thank you so much, all of you. I am totally gobsmacked. You have my full, undivided attention, which is not normally how I participate in Zoom conference calls, having done so many every day. But I am totally enthralled.

Of course, my heart breaks. I’m a new mom myself, and I just want the best for my son. I can imagine that all of you with children in your care, you want the exact same thing. The thought of not having services or having his needs met breaks my heart. I just can imagine how that breaks your heart. Yeah.

Anyway, I did have a question. I’m sorry to go off on my little stream there. I just find it so intriguing that one of you said you got the ADHD diagnosis, and another one of you said that you got an autism diagnosis, so you were able to receive services. I’m curious to know how that works. I mean, maybe I just don’t know enough about FASD, but I’m imagining, then, some of the symptoms of those other diagnoses must be very similar to FASD. How does that work?

J. Charlesworth: Yeah. I’m going to look to Bonnie, because Bonnie spoke about the different diagnoses that opened up doors, as compared to the FASD that did not.

Over to you, Bonnie.

B. McBride: Thank you. Yes, that was what I spoke to, but I suspect that the other two parents can tell you about the comorbid conditions that their children have been diagnosed with as well.

Sellene actually has nine formal diagnoses. We started receiving those diagnoses at the pediatrician level to the age of four. Now that she has a pediatric psychiatrist, we have added some additional diagnoses, as the behaviours and the symptoms have arisen, in order to hone in and fine-tune how we can best support her.

[4:15 p.m.]

In my region, which is the Interior Health region, you get what’s called an IHCAN assessment. We either send children, like the report indicated, down an FASD stream or down an autism stream. The wait is about two years for that.

We went down that stream with the intention of receiving an FASD diagnosis because we had that confirmed ma­ternal drinking. We received at the time what they don’t diagnose anymore: alcohol-related neurodevelopmental disorder and ADHD and a sensory dysregulation disorder. So she got three diagnoses at once. As her needs evolved and escalated, and we were starting to interact with other service providers and agencies, we started to advocate to have a second neuropsych ed completed, which the Ministry of Children and Families paid for via our post-adoption assistance.

The wait-list to receive one through the school system here is six years. We would have been another two years through MCFD, six years through the school, so we advocated and received private funding. We did a private assessment, and at that time, they diagnosed her with autism. That’s how we’ve opened up a lot of the doors that we have. There are lots of similarities there, but that FASD diagnosis is one that does not open any of those doors.

K. Kirkpatrick: Thank you very much for that. I was very emotional. I see many people were as well.

A couple questions. I think it was Bonnie…. Sorry, we’re asking Bonnie all these questions. I have questions about Dylan and some other things too.

A director of research and services for FASD is something that you said that the province desperately needs. This will just demonstrate my lack of knowledge, I think, maybe, about the construction of the system. I don’t know, and maybe Jennifer can tell me…. Is that a similar position to what the province maybe has for young people with autism or maybe has for young people with other cognitive concerns?

J. Charlesworth: It might be something we can speak to in terms of the structure. Alan certainly has some experience as well, having been in the ministry. Bonnie may want to comment about why that is important, and we can come back, Karin, to talking about the structure and the system.

B. McBride: We have been advocating for several years. The Ministry of Children and Families has indicated for several years that they’d like to move toward a needs-based model for services, as opposed to a diagnosis-based model.

Right now you need to have one of three specific diagnoses in order to qualify for child and youth with special needs services and funding. FASD is not on that list. The ministry has recognized that that needs to happen, but they haven’t put their foot out yet and changed that. The hope was that that was going to happen this year. That’s one of the immediate recommendations of the report.

When the budget came out this week…. It doesn’t look like the funding is there to change the model. The minister, in her response to the report, actually referenced a new committee they’d put together, the Minister’s Advisory Council on Children and Youth with Support Needs. They invited parents to be part of that group. They have in­cluded no parents or organizations on that council that specifically have children with FASD. They seem to be still rallying around those same three diagnoses.

If MCFD isn’t interested in bringing FASD into that fold and not interested in changing the structure so it’s not diagnosis-based, then MCFD needs to create a new child and youth with FASD needs, because those autism kids and the kids with the intellectual disabilities or Down Syndrome are captured under the umbrella of CYSN. That’s what I was referring to.

[4:20 p.m.]

K. Kirkpatrick: Thank you. That’s very helpful.

Jennifer, we can leave that. We can have the other conversation outside of this. I don’t want to take their time.

J. Sims (Chair): Thank you, Karin.

Now over to Henry.

H. Yao: Thank you so much for the opportunity.

If you don’t mind, I would first start with a few comments. First of all, I am just humbled by your family’s willingness to be vulnerable and share your painful experience with us. As MLAs, we often read reports from committees, and it’s hard sometimes to connect that mental logic to something that emotional. I just so appreciate all of the stories you guys are sharing to help us have a de­eper, heartfelt appreciation of what you, as parents, are going through, and several of the challenges, without a doubt, are incredible. I do not foresee myself to have even a quarter of the strength to deal with what you guys have had to handle.

Thank you guys so much, not just for looking after your children but also for sharing that painful experience with us to help us have a deeper appreciation — for us to be able to see the statistics, not just as numbers but as individual lives, individual stories and individual, unique youths and children growing up. I know that some of my colleagues who spoke definitely had a lot of really great questions about children. I am going to redirect my question to directly ask the parents, to Deanna and Bonnie.

Obviously, as we mentioned, FASD often has been seen as a blaming-oriented diagnosis, to the parents. Therefore, there’s a lot of restrictions and a lack of funding to support our children. My assumption, if you don’t mind me asking the question, is there must also be fairly limited support for parents, then, regarding the kind of social network, the kind of social group that many other families who have children with special needs count on to support parents through difficult times.

May I ask, based upon your experience…? Can you help me understand a bit more, other than your family and friends, what kinds of support networks are actually out there, or is there a lack of a support network for parents?

J. Charlesworth: Great question. Who would like to start — Deanna?

D. Jones: There aren’t any supports for us. I ask this question all the time: is there somebody? I need something. As a single mom — and I have my own business — I don’t even get access to much of anything. Obviously, they’re my own choices, but it’s tough to find the support and stuff.

Luckily for us, we have had amazing support with the key worker. We had a key worker that worked with us for six years, and we had tons and tons of support from the key worker. Now we are working with another key worker. We’ve been with them for two years.

That, I think, is the biggest piece. That’s where we’re getting that support from, but there isn’t anything else. We do have support groups. I run an adoption support group here in our community, and there are several FASD families involved in that. We support each other, but because everyone’s stories are different, for your own individual, personal stuff, there isn’t anything. Maybe Bonnie can speak to that, but for myself, I haven’t been able to find anything. We’ve asked several times, and we have searched high and low, trying to find something that might work. Unfortunately, we haven’t had any luck.

J. Charlesworth: How about Leona? Would you like to comment on supports? Where are you as a parent?

L. Kampman: Well, there aren’t any. We have the key worker program. I’ve been fortunate to have a couple of good key workers. For a while there, there was a bit of transition going on there. Again, I think, if they’re eager to learn from the parents, then you can get some of the supports. I’m not sure what the RCY findings, of their training with key workers, are. Other than the key worker program, which has been the only kind of connection, no.

S. Chant: I, too, am remiss in my earlier comments. I did not say thank you to everybody. At that point, my social graces were shot. Thank you to everybody who has been speaking to us today. It really helps add depth to our discussions later. I really do appreciate that.

[4:25 p.m.]

My question is around when you’re working with a key worker, can a key worker do anything like go to school with the child? If they have a relationship and if they have learned, from the parent, various skills on helping the child get through things or whatever, is the key worker able to translate that into another environment that the child is in when the parent is not there?

M. Himmelreich: Can I speak to that, Jennifer?

J. Charlesworth: Yes. Please go ahead, Myles.

M. Himmelreich: I just want to share a little bit in regard to what our findings were as we were travelling around the province. For the key worker program, in every place we went, they had a different idea of what their role was. Some said: “I work from nine to five. I have these families I support.” Another one said: “I’m just available whenever they need. They’ll come to the office and say: ‘Can you go get groceries?’ So I go get groceries. I’m not really sure what my role is.” Another person said: “I kind of transitioned into this role.”

Another key worker had said that…. We were told that she was a key worker, and she was a key worker, but she actually wasn’t even on the key worker list. We actually had an opportunity to meet with her, in her office, and talk to her.

That was one of the things that we found that’s really missing. Jennifer spoke to this in the beginning. The key worker program needs to be looked at, because we can’t say a key worker does this or that if they’re doing different things in different parts of the province, and they shouldn’t be doing different things in different parts of the province. They should be doing the same thing and have the same basic structure on what they do and what they offer.

I think that’s hard for families, because if we go from one key worker to another, you may have a great support system with this key worker, and then this other one comes in, and they’re very much sticking to the: “Well, I work nine to five, and that’s it.” I think it’s really important to have the key worker program structured, as to what their role is, in regard to FASD. I think that really needs to be looked at, because what we find — this is what the parents shared, and it’s unfortunate — is that their relationships with people, a lot of times, was with the key worker.

There are no other support systems when it comes to other parents with kids with disabilities. When it comes to FASD, it’s a different disability. So having those support groups and having those parents that understand you, it’s not the same as the parents of kids with autism or Down syndrome or anything like that. To lump parents in and go, “Well, just go to this support group….” It’s different.

One of the things we saw at the forum was when these parents came together. I spoke about how the kids would look at each other and be like: “Oh my goodness. I’m not the only one.” You got that with the parents too. It’s different, right? If their only support and contact outside of the family is a key worker, we’ve got to make sure that that key worker is doing the right thing and knows what they need to do.

S. Chant: Can I have a follow-up question? Who has oversight of the key workers?

J. Charlesworth: The key worker parent support program is a ministry-funded program, but the funds are distributed to community-based agencies. As Myles said, at each community agency, there are some guidelines, and they would be set out in some contract language, but it’s actually expressed very differently. What you might have in Kamloops will be completely different than in Kelowna, for example. But it is distributed funding through community-based agencies.

S. Chant: Wow. Okay. Thank you.

J. Sims (Chair): Thank you very much.

You guys can stay on. I know, because we are in open meeting, you can keep your cameras on, or you might want to take your cameras off. That’s a personal choice.

We are going to be carrying on with the meeting until five o’clock. Before we do end this part of the meeting, I do want to, once again, thank each and every one of you for your amazing courage and fortitude and for the passion you have to keep fighting for kids, to keep fighting for your own kids.

[4:30 p.m.]

With that, I am going to be asking vice-Chair Coralee if she could take over the chair. I will have audio, but I have an emergency family issue that I have to deal with. So I will be taking off to deal with that. Those of you who are parents will understand that, and I hope the rest of you will say that you understand it, even if you don’t.

Really, once again, from the bottom of my heart, thank you to all of you. I’m getting very, very emotional, maybe because I’m going into this meeting or maybe…. Well, I know you’ve had quite an impact on each and every one of us. So once again, thank you for sharing your stories.

Coralee, over to you. I’m going to not have video from now on, but I am getting in the car to drive to a different location. I will keep the audio on so I can still participate. Thank you.

[C. Oakes in the chair.]

C. Oakes (Deputy Chair): Thank you very much, Jinny. I think all of us understand when emergencies come up. We completely understand, and thank you for that.

Before I open up, I do want to make a comment that there is a lot of material to go through in this report. I do not want any of us to feel that we have a half an hour to go through it. I want to open it up to the committee that I think, to give a fulsome review of this report, we may need to have an additional committee meeting. I just put that out to all of my colleagues on the screen today so that nobody feels rushed or that we have to cut that off.

To Jennifer and your team, I hope that is okay — if we can continue to have this critically important conversation in these reports. Like I said, we have to take action. We have to figure this out. With that, I’m going to turn it over to Henry to start.

H. Yao: Thank you, co-Chair. I just want to say I completely echo your comment. You’re absolutely correct. It is a huge and very dense report.

Listening to the parents talking about their stories amplified its potential to help us understand the importance for us to address this issue. Even though, in the past, I used to be a youth worker, my personal exposure to FASD is still limited. I worked with only a few children in the past regarding FASD. I understood a certain level.

Again, I will never pretend that I fully understand or comprehend the situation. But I do realize the social negative stigmatization upon parents and around children with FASD and that a certain amount of blame, a certain amount of criticism, a certain amount of anticipated responsibility often denies a lot of proper and great support that should be available but is not accessible to some of the parents.

Thank you so much, Chair, for bringing up that importance — that we need to take this committee’s discussion further and the report further. I want to take a moment to thank all the parents and, of course, Dr. Charlesworth, to allow us, to give, the opportunity to bring life to this report, to help us understand that every number that exists in this report is a story, is an opportunity.

I also want to take a moment to thank Myles. You know what? I have personally not had an opportunity to engage with somebody who is a live representation of how FASD, with proper support and proper care, can become not just a productive individual and thrive in the community but also become such a great advocate for our community to move forward towards the right direction to better our children and for the betterment of our parents.

I do want to just add one more comment. I apologize if I talk a bit too long, but I do want to add one more comment to the parents. It’s simple for parents…. We also need to realize that when the parents are not getting proper support, they also deny their ability to participate in society in a more functional, productive, constructive manner in a way that fulfils their own individual potential as well. We’ll have to make sure that’s also part of our discussion as we move forward.

Thank you so much, Chair, for allowing me to speak.

C. Oakes (Deputy Chair): Thanks, Henry.

Susie.

S. Chant: Thank you very much. I think I’ll use Jennifer’s word. I’m troubled. I’m very troubled.

[4:35 p.m.]

Brief little background. I graduated from nursing in 1985, which is a little while ago. During our obstetrical training — because I don’t do babies — one of the jobs that we had at one point was to go into the nursery at night and hold the babies that were withdrawing from various substances. They had been born and no longer had that substance going through their system because it wasn’t being available through the maternal system.

I can tell you. That’s when the discrimination began for the parent and the child, because the wording that we were given…. We knew that these small children needed…. All we were supposed to do was hold them so that they had somebody to be held by, and so on. Quite often their parent was in another room, also dealing with her demons. Withdrawal was just a given. It was just going to have to happen, because there were no other alternatives at that time.

I’m not saying it was right. I was a student at the time and did not have any power whatsoever. However, I can tell you that that is where I first saw the discrimination — not necessarily just with FASD but many other things, as well, around use of substances.

I am very troubled that we haven’t been able to move to a needs-based model. We see this in many other spheres, where we match the person to the services, not the services to the person. I am hoping that maybe this group of government is able to start turning that wheel around and start looking at making it so that we’ve got things that work for people, not people that work for things. Clearly, here we’ve got people working and working and not being able to achieve the stability and support that is needed in these circumstances. I’m hoping that we get that opportunity.

The question that I have…. I hope I don’t offend anybody. If I do, I apologize severely. In your report, did you have access to any kids that were with their biological families, as a family voice? When I read through the report, I did not get that impression. However, I’m not sure whether I was correct or not.

J. Charlesworth: No, it’s a great question, Susie. Thank you.

Sarah, you may want to speak to this as well. I’ll start it off, and then you can pick up from there.

Of the families that participated, we did not have a biological mom within the family grouping. We had a biological grandmother who was raising five of her grandchildren. This was really interesting, because we worked really hard to try and find a biological mom to participate. Then when we started to go into community, we realized: “Well, this is why.” That stigma that you talked about for the mom…. That is prenatal, when the stigma and the shame is starting, right? You experienced it at time of birth.

There is such stigma and shame. The messaging is, as Myles said, “Because FASD is 100 percent preventable, then you’ve done this to your child,” rather than the mom feeling, “Okay, so now what? What are we going to do?” There is such shame attached to this — that is societally constructed — that the fear of participating in something like this was profound. As you can appreciate, that sense of: “Well, who is this RCY, anyway? Are you government? Might you be child welfare?” All of those kinds of things.

We were very mindful of that. One of the things that was beautiful about doing the community dialogues is that was when we connected with biological moms.

Leona has actually got something to comment. Then I’ll pass it over to you, Sarah.

L. Kampman: It has to do with the stigma of birth moms. Even a few weeks ago a learning support teacher had to write a memo to two of the teachers about one of my children. As he referred to me as her adoptive mom, he was trying to probably not have the stigma put on me. But my first thought when I read that email was: “Do we teach our adopted children differently — that I had to be titled ‘adoptive’?”

[4:40 p.m.]

Another comment that came previously was…. My children have always had their diagnosis. Just like someone that has diabetes, they’re entitled to know that they have FASD. That’s their medical history. They deserve to know that.

When the learning support teacher came on, it wasn’t put into the IEP, the new one. I questioned that. I said: “Where did her diagnosis go on the IEP?” It was: “We wan­ted to be sensitive, because we weren’t aware if she was aware of it or if Mom was the drinker, basically.”

That’s a stigma that’s happening in our society.

S. Chant: Massive assumptions.

L. Kampman: Yeah. It has to stop.

J. Charlesworth: Thank you so much, Leona. It’s very subtle and nuanced.

Sarah, do you want to just speak to the birth moms that we met through the community?

I can see there are a few more questions. I’ll pass on to that.

S. Levine: Thank you, Jennifer. Yes.

As Jennifer mentioned, we did connect with some biological moms in the community dialogues. That was a really valuable piece with those community dialogues.

What we did here was around the stigma and the blame and the fear to come forward and talk about this issue with your child. Within the community dialogues, it was a little bit of a safer space with the group.

We ensured that we provided a number of ways for biological moms to connect with us with those dialogues, as well, so that it wasn’t just telling your story. We had different ways of connecting — through the written word, being able to pass in pieces of paper so that you didn’t have to verbally speak in the circles. That’s where we connected with our biological moms.

As Jennifer mentioned, we did try to have some bio moms within our research group as well. We did connect with our biological grandmother.

K. Kirkpatrick: I’m not sure, Madam Chair, if this is for bringing up under “other business,” but it is connected to this.

I know, historically, MCFD has come and reported to this committee on the reports and the steps and actions being taken.

First off, I asked to be on this committee because I think it is the most important committee. We have the most val­uable resource in this province that we are responsible for stewarding, and I think that we all need to be on the same page with that.

I would ask if we could have MCFD come and talk to us — I’m sure there are things going on that we’re just not aware of — about progress on this and report out, perhaps, on the CYSN framework, which I know is imminent. That would be a request, if we could have MCFD come and walk us through what’s happening with respect to FASD but, as well, CYSN generally.

C. Oakes (Deputy Chair): Susan, can we add that to a future committee meeting?

S. Sourial (Clerk Assistant, Committees and Interparliamentary Relations): The discussion or the actual invitation?

C. Oakes (Deputy Chair): I think, to Karin’s point, it’s twofold. First, I am hearing, at least, that we need far more dialogue on what services are out there. I think a great way to understand that is to have the ministry come and present to the committee what they are doing. I think that’s an important step.

I think the second piece of that is…. Maybe it comes after the ministry has presented. I mean, I only speak personally. There are so many questions I have throughout this report. I feel a little anxious that we are trying to get through a whole bunch of questions in a limited time. So I think it may even be a couple of meetings that we’re looking at.

Susie, to your point, we’ve got to get this right. We owe it to make sure that we are committed to doing the work and making sure that we have progress on this.

[4:45 p.m.]

If we could invite the ministry to update us on what they’re doing, as a first step, and then maybe as a second step, like I said, once we’ve maybe heard from the ministry, go back to the report and ask some very specific questions.

Karin, do you have anything further?

K. Kirkpatrick: No. Thank you very much. I think that would be very helpful.

K. Paddon: Because we had already kind of decided we were having another meeting, I’m going to ask this question. I was going to hold off on it. While we were talking, and especially while the parents were talking and Myles was talking about FASD and the stigma, it just kept reminding me of how we used to see autism.

Autism used to be something that…. With no other ex­planation, of course, it’s the mother’s fault. I hear that, and I just want to recognize that this an echo of behaviour that we have engaged in historically. The next thing that will be the mother’s fault is yet to come. I’m sorry, to the mothers. I’ll say it, because I see it.

I’ve had the opportunity to walk alongside and support families and individuals who mostly had the co-morbidities, the dual diagnosis, that allowed them to access the services I was actually working in, but who did have FASD. Not everybody had that gift of truth that was described, so their diagnosis of FASD was more presumed or unofficial, which I know is a major barrier when you cross that age 19.

Someone else mentioned CLBC services for people with FASD. But it might look like British Columbians are do­ing…. For everyone working in those services that are being accessed by adults with FASD, I have nothing but good things to say — and as someone who’s done work with CLBC.

I do also want to acknowledge the history. This was as a result of a court case. And I think these pieces of history are very important, even in considering, as was mentioned by a colleague, the density and the seriousness of the report and the important emotions that I don’t think should be excluded from the stories that you all shared today. I was very touched. Now I’m trying to put my analytic brain back on and clear the decks. But the history here is important. We didn’t get to this place with intention to exclude, yet we are evaluating this report that is saying this is the place we’re at.

I don’t want to put any more judgement on the intentions of history than I want to put on the mothers. But here we find ourselves, and here are the lessons that we’ve learned with autism; with intellectual disabilities or developmental disabilities and institutionalization; with mental health issues, which are not the same but have had similar types of stigma, where it’s self-care as opposed to “Your mother did this to you” — although there are a lot of cou­ches where, I’m sure, a lot of people are hearing about what mothers did. Just this history and the intersectionality of it. There are so many people on the ground working so hard.

I guess all of that is to come to the point of the recommendations, which I thank you for, and I know we’ll discuss more. They are based on systems change of existing systems. I just want to know how that lens was applied, as opposed to what I was kind of expecting, if I’m being completely honest, which would be a non-existing systems approach — not a “tweak this” system but “this is what the families are telling us.”

That’s my question. How did we get there with the families?

J. Charlesworth: Wow. Great question and great analysis. I’ll come back in a moment to the recommendations but do want to pick up something that I think is so important. History does play a role. Attitudes and beliefs do shift over time. Implicit bias shifts over time. It’s quite possible to achieve change — implicit and explicit bias — and that does often require a movement.

[4:50 p.m.]

I’ve been around for 43 years, and I’ve seen a few movements in my day, de-institutionalization being one, ASD for sure. So I think that kind of gets to your question around: what’s the lens we apply? I can see Myles will have something to say here, too.

It’s a dilemma for us, in some ways, Kelli, that when you’re looking at these things, you’re thinking: “Now, do we try and tweak the existing system, or are we talking about a transformation?” The way in which we constructed the recommendations was actually a both-and. There are things like, speaking to the key worker parent support program…. That is the one existing program, and improving that, recognizing that it’s almost like you have a parallel…. You’ve got: “Okay, make this work a little bit better.” At the same time, the child and youth with support needs framework is actually intending to be quite transformational.

What we understand is that there is that commitment and a shared understanding of the importance of moving away from diagnoses and into functional needs and to ensure and address the equity across not only the experiences, the developmental needs of children and youth, but also across this whole province and making sure that there is equitable access.

The recommendations kind of speak to…. In this interim period, let’s, yes, tweak what we’ve got. Let’s expand the access of CYSN services to the population of children and youth with FASD, and it’s almost like they’re running on parallel tracks. But my god, let’s put effort and energy into the CYSN, and let’s get going on that, because that could make the difference. That can be transformational.

You raise a point. It’s actually one that we’re debating and working with right now in our next report that we’ll bring to you. Sometimes we don’t want to just tweak the edges of a system that is fundamentally flawed. How is it that we can figure out how to meet the needs right now, because these families need support right now, at the same time as having our hopes and dreams and aspirations, in a good way? We know how to do better.

I don’t know if that helps, but I think you can add something. We really appreciate your analysis. We tried to do a both-and.

C. Oakes (Deputy Chair): Myles, can we ask you to make some comments?

M. Himmelreich: Sure, thank you.

I just wanted to expand a little bit about what you are talking about there, Kelli, in regards to autism. Again, knowing our history is always important. Understanding that with autism, it was seen as…. The mothers were referred to as refrigerator moms because they were cold-hearted and incapable of loving their child. So their children were being removed because it was seen as they were physically incapable of loving their child. There was a lot of shame, blame and stigma associated with it.

When that changed and people realized, “Oh, okay, that’s not the actual thing,” that’s when other things started changing. Then we fast-forward, say, 15 or so years, and now we have The Good Doctor on TV. We have the kids on YouTube making a game-winning basketball shot. Or he’s really good at science and math. Those are the things people equate to autistic children, these positive things.

FASD is still stuck because of the shame, blame and stigma that are put on birth mothers. That’s where we so need to change that vision and understanding, because 4 percent of Canadians have diagnosed FASD. That’s higher than autism. That’s higher than Down syndrome. That’s higher than ADHD. But that is a very low percentage to what the actuality is of how many people have FASD, because of the fact that we’re still struggling with the alcohol intake before people know that they’re pregnant.

Alcohol doesn’t pick on race; it doesn’t know race. So 80 percent of the population, I believe it was, drinks alcohol. It’s what they were looking at, in the last stats. We even see that as one of the things that stayed open, essential services. Understanding the impact that that has…. By then assuming that we just shame and blame mothers….

[4:55 p.m.]

I can speak from my own experience that by leaving my mom alone and unsupported, I then became a victim who suffered, and I was left alone and unsupported. We need to get past that and look at how to support those individuals now, how to support the parents and how to change those programs.

Sometimes it’s going to be a matter of going: “You know what? This program is really good, and it could transfer over supports for FASD.” But then in other areas having to look at it and go: “You know what? We need to create something new that’s specific for FASD.” Right? That’s where I think we’ve got to be a little creative and figure out how we can do that and figure out where certain pieces will work and where we have to create new pieces.

C. Oakes (Deputy Chair): Thank you very much, Myles.

Susie, do you have another question?

S. Chant: I certainly do, as usual. Sorry.

The thing that becomes very evident to me in this report is that this is not just an MCFD thing. This is, really, a cross-ministerial thing. Kids spend their time in school. Education has got to be thinking about this. The Ministry of Mental Health has got to be thinking about this. Health has to be thinking about this.

As you brought to our attention, Myles, corrections has to be thinking about this.

It is also not just a child issue. It’s a cradle-to-grave thing. So we also need to have that broader focus of trying to coordinate some intra-ministerial work, not just keeping our focus laser-lensed on MCFD, I think. It’s another sort of component of this exercise, because really, in order to make headway, if we’re going to support kids, we’ve got to look at their school environment. We’ve got to look at all these other things as well. I’ve heard over and over that the mental health component is critically important.

Let’s make sure that we think about this right from the get-go. Let’s not start in just that one sphere. Let’s make sure we include the other stuff.

That’s me.

C. Oakes (Deputy Chair): Thank you very much, Susie.

Listening to what everyone is saying, perhaps, when we talk about next steps, maybe it would be worthwhile for us as a committee to meet, and before we go off and in­vite certain ministries…. I think it would be very worthwhile for us as a committee to call or convene a meeting to talk about our priorities, to talk about our work plan for the upcoming year and how we are going to approach these recommendations and these reports and how we will interact. I think that would be important.

Maybe another item that we could potentially put on that next meeting is to look at: is there any way that we can get COVID-19 supports to families? For children and families in support of…. If there would be additional ways for us to access some funds, maybe that gives us a little bit of time to look at that. That might be a recommendation, as a committee, that we can move forward. I think that that would help the committee understand what our next steps will be and perhaps put a work plan together to look at moving forward.

Susan, is that something that would work, from the Clerk’s office?

S. Sourial (Clerk Assistant, Committees and Interparliamentary Relations): Yes, certainly. What we can do is…. The first step would be to coordinate with members and plan a second meeting that would be a planning meeting. So a discussion meeting with committee members.

We can prepare a possible draft outline, high level, of next steps for the committee in terms of which ministries could be invited to speak to the committee and how many meetings the committee wants. As said, high level. Then we can incorporate the input from committee members at that meeting.

C. Oakes (Deputy Chair): Perfect.

Just the commitment to Dr. Charlesworth and your entire team that I hope that you hear from each of us: how incredibly important and how much we appreciate — the work that you are doing on this. You have our commitment that as a committee we will work hard because, quite frankly, as Karin said, our children deserve for us to do this work.

[5:00 p.m.]

To Sarah and to Myles. Myles, you’re going to be that individual that’s in the back of my mind — actually, in the front of my mind — about how important it is to listen to people’s lived experiences and to draw that forward. I just really want to say thank you for that.

Finally, just to the families, words cannot express how much your advocacy has meant, I think, to each of us on this screen today and how you have our absolute admiration. But more importantly, we have work to do. You have our commitment that we will put that work in for you, because you deserve that, and your children deserve that.

With that, Susan, I’m not sure if I need to do anything else. We’re one minute over. I apologize. I know that there’s so much more work to do.

Jennifer, if you have any comments as we close….

J. Charlesworth: Well, I’ll just offer one, really, and that is deep gratitude for the listening and the learning we’ve done together in this circle. I know, Coralee and Jinny, that was your hope — that these opportunities would be ones for learning and discussion. I’m deeply grateful to the families and Myles for joining in this virtual circle. It means a tremendous amount to hear that level of commitment in your role as champions for children and youth.

I’m deeply grateful and also looking forward to the work ahead and support in that. One of the things we’re doing, and it’s new for us, too…. This report, as Myles so eloquently said, cannot sit on the shelf. I hear that commitment from you. That’s also our commitment to you, us looking at the ways that we can take it out and take it into community that starts to — and maybe, Kelli, that was one of the things you were thinking of — really shift the hearts and minds, because that influences public policy and practice.

That’s where we’re going, and we’re happy to share. It’s kind of ideas that are germinating right now. I’m deeply grateful for your interest and your commitment and for listening to us all.

C. Oakes (Deputy Chair): Thank you.

With that, I guess…. Do we need a motion to adjourn?

Thank you, Henry. Appreciate it.

Susie seconded.

Motion approved.

The committee adjourned at 5:03 p.m.