The committee met at 9:05 a.m.

[N. Simons in the chair.]

N. Simons (Chair): Good morning, ladies and gentlemen, and welcome to the Select Standing Committee on Children and Youth. I’m pleased to be able to have an opportunity — we all are — to review some reports and the service plan.

It’s nice to see Dr. Charlesworth and Alan Markwart here, ready to give us information on the annual report and service plan 2019-20 — well, ’18 to ’20.

Welcome.

I also want to welcome Jennifer Arril, who is our Committee Clerk. It’s nice to have you here.

With that, let’s begin.

Consideration of Representative
for Children and Youth Reports

ANNUAL REPORT AND SERVICE PLAN

J. Charlesworth: Lovely to be here. I would like to begin by acknowledging that we’re meeting today on the traditional territories of the Coast Salish peoples — most particularly, the Tsleil-Waututh, Squamish and Musqueam nations.

I’m pleased to be here this morning to give you a lot of information. We’ll present three reports. First of all, the annual report and service plan. Then we’ll move into two reports that we released, one in November and one in December. It’s certainly been a busy four months since I started on August 31 and was appointed on October 1. It’s also been a particularly fulfilling period, and I could not be more thrilled to have this opportunity to share where we’re at and to continue the work that was started by my predecessor, Bernard Richard.

I’d like to introduce members of our team, first of all, who are here with me today. You know the deputy representative Alan Markwart; chief investigator Carly Hyman; communication guru Jeff Rud; and members of our CID team who have been immersed in the work that led to two of the reports that we’re going to share with you.

The first is Monique Auger. Monique will speak about the Time to Listen report. Jessica Randhawa and Jenn Morgan will be available to us to talk about the second report we’re going to be speaking on, on children and youth with special needs, which will also lead into our discussions this afternoon.

This afternoon we’ll be joined by our ED of advocacy, Blair Mitchell, as he brings insights into the experience of families and young people who are accessing services to children and youth with special needs.

Since September, we’ve released three reports. I’m going to begin, first of all, with the annual report and service plan. As a way of starting, I’d also like to thank you and, also, the many people that we are interacting with every day who are working in support of vulnerable children and families. I can say that these first four or 4½ months now have been filled with opportunities to learn, to grow and a deep welcome from citizens in the province of British Columbia and a deep welcome from our dedicated staff. I’m happy to be bringing them here today so that you can learn from them as well.

The first report, the annual report, was tabled in September of 2018, so it’s largely a report that reflects the work done under my predecessor, Bernard Richard. It spells out some of the plans for the current and next two fiscal years, many of which we are continuing, some of which we are adding to or are modifying.

This report provides detailed information on the activities of the various programs of our office, as well as a section on measuring our performance against key performance indicators.

In 2017-18, the RCY continued to advocate for B.C.’s most vulnerable children, youth and families in a number of different ways through the work of advocacy, CID and moni­toring, as well as our Indigenous strategies and partnerships teams.

In addition to individual advocacy and individual investigative reports, our work also included systemic advocacy. As you know from presentations to this committee beforehand, that’s of particular interest to me. This is the extraction of themes from individual advocacy cases and aggregate reviews that are designed to identify those broad trends and patterns that can inform improvements to the child- and youth-serving system. We’ll be working with these patterns in new ways in the coming year.

During 2017-18, RCY opened more than 1,500 new advo­cacy cases to directly assist children, youth and their families, and in many cases that was because these children and families were frustrated or had reached an impasse with MCFD, other government ministries and public bodies.

[9:10 a.m.]

Working out of RCY’s three office locations — Burnaby, Prince George and Victoria — our advocates helped hundreds of children and families with direct advice, information and assistance, while also advocating for larger changes within the complex system of services. We can happily give you some examples of that, and there are examples in the report.

Our monitoring team continues to provide oversight and review of government-funded services for vulnerable children and monitor the outcomes of various reports. In ’17-18, monitoring led to the release of two reports, the first being Room for Improvement: Toward Better Education Outcomes for Children in Care, and the fourth, B.C. Adoption and Permanency Options Update.

Moving on to our critical injury and death review team, they continue to review and investigate critical injuries and deaths of children and youth who have received reviewable services from government. In ’17-18, the CID team reviewed in-mandate reportables of 936 critical injuries and deaths. I should note that those are specific to MCFD. Although our act does allow for or requires Health to report, we actually don’t yet have those reports. So this is specific to MCFD.

In addition to these initial reviews, the CID completed 15 comprehensive case reviews and released the investigative report Missing Pieces: Joshua’s Story. This report examined the events and impact of services offered or not offered, leading up to the suicide death of a teenager while he was on an extended stay at B.C. Children’s. That report included just one recommendation, calling for the Ministry of Mental Health and Addictions to lead the development of a full continuum of mental health services for children and youth in the province. I’m pleased to note that our office has been consulted by the ministry as it continues in this work.

I won’t go over everything that’s included in the report, but here are a few things that stand out. We had nearly 2,600 calls to advocacy. That’s 1,500 individual cases. We released six public reports. We employed 15 youth, something I’m particularly proud of. We visited 35 B.C. communities. We appeared before legislative committees — this one and the Select Standing Committee on Finance and Government — six times, engaged with more than 2,700 youth through our outreach, released five videos and had nearly 1.9 million hits on our website.

Of course, this annual report was released at a time that there was a transition in leadership. Since then, we’ve been working on an update to our strategic plan. That’s reflected in this report. While the basic priorities remain, we have made some changes in how we do our work.

I want to speak about Indigenous child well-being, specifically the reduction of Indigenous children in government care and the improvement of services to Indigenous children and families. That remains the top priority. In fact, we’ve tried to enhance our capacity to bring out these improvements through a few changes. As you know from prior presentations, we’ve changed our leadership structure. So now we have two deputies, one of whom is Dawn Thomas, who is leading the team that’s focusing on Indigenous issues.

We’ve decided to focus on two areas within that team, the first being monitoring, research and evaluation initiatives and projects to ensure that services and supports are accessible, appropriate, culturally attuned and effective for Indigenous children and youth. Within that, we’re taking a look at such things as the UN declaration on the rights of Indigenous peoples, the Chief Ed John report, the calls to action from the Truth and Reconciliation Commission, the upcoming missing and murdered Indigenous women and girls report and other key reports pertaining to things like Jordan’s principle and the Human Rights Tribunal.

That’s something we haven’t done — taken a look at those external elements before and how they’re being translated into public policy in the province of British Columbia.

That’s one piece. The other key responsibility of the Indigenous focus team will be leading our future youth in community engagement efforts, particularly when it comes to Indigenous youth in communities. In this area, we’re refocusing our work, in many cases using our expertise in advocacy and child rights to enhance existing youth engagement initiatives across the province. Those are things that are already being done within delegated agencies, friendship centres and Indigenous organizations so that we can complement, enhance and bring a rights-based lens into their work. We’ve had tremendous reception from that.

I want to emphasize that ISP is actually a foundational piece. If you imagine our three teams, underpinning that is ISP.

[9:15 a.m.]

This makes sense, given the dramatic and, frankly, unacceptable overrepresentation of Indigenous children and youth in the child welfare system. We know that it’s critical that we bring an Indigenous lens to all that we do. Our ISP team builds relationships with Indigenous leadership, grounds our work in Indigenous ways of knowing and being, surfaces issues that are important to Indigenous communities and creates a cultural safety framework for our office so that all Indigenous staff, stakeholders, children and families feel supported and safer in their interactions with our organization.

Just speaking about cultural safety — something near and dear to my heart — that’s a specific area we take very seriously and an area that we are actually hoping we can offer some promising practices out further, including into other ministries. It’s an ongoing project, but I strongly believe that the only way to make our own offices culturally safer is by practising cultural humility. We have to fully appreciate and engage with and work towards resolution in the complexity that Indigenous children, youth and families are facing.

Key internally focused questions for me since I arrived on the job include: how could our office better serve children and youth? Where are the gaps, and how can we best work collaboratively to fill them? How do we build a core ISP team and embed Indigenous ways of knowing and being and research methodologies into our daily work? How do we work in a culturally safer way? How do we incorporate youth voices and experiences into our practice? How do we use our limited resources most efficiently and effectively to meet our goals? And what are the themes and patterns that we’re seeing that we can respond more effectively to?

Key externally focused questions include: how do we main­tain our independence while ensuring that we’re not isolated and that we’re building those healthy working relationships with government ministries, First Nations, Métis and Indigenous leadership and community leaders? How might we broaden our influence and contributions in recognition of the fact that child well-being is about more than MCFD? You’ll see that in the report — recommendations that we’ll talk about shortly. What’s working well for children in B.C., and how do we scale, support the scaling, amplify or enhance those?

As you know, I wanted this job for a long time, and now that I’m in it, I’m even more excited about the possibilities. I do truly believe that we’re in a position to make the necessary needed changes in the system. I’m excited to use the different mechanisms, build on the work that’s been done by my predecessors and work in new ways that will highlight those larger trends that affect children and youth and convene our community partners to explore solutions together.

Now I’d be happy to answer any questions you have about our annual report and service plan.

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

I look to my colleagues. Laurie has a question.

Laurie, why don’t you start?

L. Throness: I have several questions, Chair.

N. Simons (Chair): Laurie has several questions.

L. Throness: You can just cut me off when I’ve gone too long.

N. Simons (Chair): Okay. Thank you for the permission.

L. Throness: On page 12 of your report, you mention that you needed special approval from the B.C. Human Rights Tribunal to restrict positions to Indigenous people. You wanted to get 20 percent of staff Indigenous, and that’s now 21 percent. Are you still restricting vacancies now, or has that been lifted given that you’ve achieved your goal?

J. Charlesworth: Good question. We’ve actually just posted three positions, and they’re all Indigenous preferred, not Indigenous only. We’ll continue to monitor. The situation we’ve got is that a number of our positions filled by Indigenous staff are auxiliary, so we’re trying to manage that. They’re in place in until March 31. If we’re unable to continue in support of those positions, then, of course, we would be taking a look at the Indigenous only versus Indigenous preferred.

L. Throness: But you’ve achieved your goal.

J. Charlesworth: We have achieved the goal.

L. Throness: So why would you still restrict positions to preferred? If the human rights code means something, then I would think that you would lift that after you’ve achieved your goal.

J. Charlesworth: Well, there’s a difference between Indigenous only, which we have been using, and Indigenous preferred. The reality is that 60 percent of the children and youth that we are accountable to in the office are Indigenous, so even at a 20 percent rate, one could easily argue that we need to have a staff population that’s more representative of the young people that we serve. That’s why we’re going for Indigenous preferred. It’s not exclusive, but we definitely recognize the importance of Indigenous perspectives on our team.

[9:20 a.m.]

L. Throness: I would think, though, that if you’re going to continue to prefer them, that you would need permission to do that. Do you not?

J. Charlesworth: No, we don’t. The human rights exemption is restrictive to Indigenous only.

L. Throness: Okay. On page 26, I note that you received 1,533 advocacy case calls. There are about 6,700 people in care. At the bottom of the page, it indicates that most of those 1,533 are about children in care. Is this a measure of dissatisfaction with MCFD and the work that MCFD is doing — that you would get all of these calls?

I get these calls in my office, as critic. I get many calls of people who are deeply dissatisfied with what MCFD is doing, and I’m wondering if this is a measure of dissatisfaction with them.

J. Charlesworth: That’s an interesting question. I don’t see it…. What I see it as is a measure of frustration, concern, confusion. We often find that when advocacy calls come in, people are not sure how to navigate the system, or they don’t know where to turn, or they’ve tried things and they’ve found dead ends. To that extent, I suppose it’s a measure of dissatisfaction, but it’s also, I think, a measure of the confusion that often exists around how best to access services.

Also, I think it’s a measure…. I should note that the number of calls went down from ’16-17 to ’17-18, as I’m sure you’ve noticed. What we’ve noticed, actually, is an increase in the complexity of calls. What we’re seeing is that the calls are coming…. There are fewer calls coming from what I might call the garden variety. Fairly simple solutions like: “My social worker is not giving me my clothing allowance in order for me to get my winter clothes.” It’s punitive.

We get fewer of those and more of ones where there’s an intersection of mental health, substance use, inability to access services. So the complexity is actually escalating. I think that’s what it’s a measure of. It’s a difficult system to navigate when we’re facing deep complexity.

L. Throness: The former RCY gave a report on adoptions in December of 2017. I had thought that another one was coming out, an update. I’m wondering what happened to that and whether you’ll be doing an update on adoptions.

J. Charlesworth: We absolutely have been doing an update on adoptions. There was, actually, an update that we’ve been working on through the fall, and there are a couple of things. We expect to release that in February. That will come out in February.

We’re taking a slightly different focus on that, because in that intervening period, there have been more mechanisms available within the ministry to take a look at other permanency options. We’re trying to reflect that in the report. So it’s adoption and permanency.

L. Throness: Can I ask if you’ve been involved in the Japanese adoption issue?

J. Charlesworth: No, we have not.

L. Throness: Okay. Am I still allowed…?

N. Simons (Chair): We do have other questions.

L. Throness: I do have other questions, but I can hold on it.

N. Simons (Chair): Okay. We’ll go to Michelle, then.

M. Stilwell (Deputy Chair): Thank you, Laurie, for your questions.

My first question is in regards to page 27, the advocacy cases by region. There seems to be a disproportionate number based on population, I would say, when you look at Vancouver Island.

Do you have any stats on why that is? As well, when you look at the unknown of 396 cases, could some of those also be Vancouver Island, which would increase…? Do you have any information that can validate those findings?

J. Charlesworth: I have some ideas. Alan has just returned from Mexico, so he….

A. Markwart: It’s hard to explain. There has been a long history of, I guess, more active involvement and a greater number of concerns arising from Vancouver Island, both north and south. As far as I recall, that’s been fairly consistent throughout the history of this office.

It may be a reflection of a greater degree of concern about service delivery practices in those places.

M. Stilwell (Deputy Chair): Is that something that you’re investigating and looking at improving — to reduce those numbers specifically?

[9:25 a.m.]

A. Markwart: I don’t know if we could reduce the numbers. However, we are going to be looking at doing some special looks at, for example, staffing issues in the north Island, which has been an ongoing concern, which leads to all kinds of other issues around the service delivery.

M. Stilwell (Deputy Chair): As well, on page….

J. Charlesworth: Can I just, actually, add one piece? One of the things that’s important to remember, too, is that high numbers don’t necessarily mean that there are problems. Sometimes we see high numbers when there are very strong advocacy groups or when MCFD staff are doing an excellent job letting people know about the representative’s office. So I can say that from Vancouver Island, there are some strong advocacy groups.

The other thing to bear in mind is that we actually do look…. That’s one of the things we look for: where there are hot spots within the province. If we’re seeing a significant number of complaints, for example, or concerns raised to us that are coming from a particular area, we’ll often phone up the executive director or service and say: “Is there something going on?” or “We’re seeing this. Perhaps you should be aware of that as well.”

It is a preventive measure. It’s a responsive measure when we’re seeing certain concerns. Often it is related to staffing levels.

A. Markwart: Also, our primary physical residence is in Victoria.

M. Stilwell (Deputy Chair): Well, that was sort of my question, because the RCY is…. People are more aware of the office because we live on the Island.

A. Markwart: Probably so.

N. Simons (Chair): There are also very strong MLAs on the Island.

M. Stilwell (Deputy Chair): Yes, especially in Parksville-Qualicum.

N. Simons (Chair): Can I just ask, if I may just interject for a second: does the representative’s office actually track complaints or concerns from specific offices? Is there a….?

J. Charlesworth: Yeah, we can get right down to the specific office, service delivery area.

N. Simons (Chair): Michelle, you have a follow-up?

M. Stilwell (Deputy Chair): Another question. On page 33, there is the critical injuries, a classification by RCY based on gender. There is the line for suicide attempt as well as substance related. I’m just wondering if those could be one and the same. Are those that are substance abuse ending up with suicide…? Are they using, for suicide attempt…? Are they differentiated? Do you understand what I’m saying?

J. Charlesworth: I think I understand, but let me make sure. Are you suggesting: do we see…

M. Stilwell (Deputy Chair): …that the suicide attempt is substance abuse in the sense of substance related, because it says “substance related”? So is the suicide attempt via drug overdose intentional, and how are you differentiating between those?

J. Charlesworth: Yes. This is why we bring these amazing people. Carly and Jenn are steeped in this data, so I’m going to turn to them for their expertise.

J. Morgan: I work as an analyst on the team, so one of my roles is to work with the injury reports as they come in. What you can see from the report is that we classify them into different types, and we do that partly based on the description from the service practitioner, which would be, perhaps, the social worker or a mental health clinician.

When we categorize those, a substance-related injury would be something that was an accidental overdose. In some cases, a youth will use, say, a substance — whether it’s a prescription medication — as a suicide attempt. What we do in those cases where it’s unclear is go through the records. We have access to more than just the report around the specific injury from the social worker. We have the ability to go in and look through the case management system. So what we do is look for youth statements of, “I used this as a suicide attempt,” or: “I was at a party, I took too much, and it was an accidental overdose.”

A. Markwart: There’s not a duplicate count.

M. Stilwell (Deputy Chair): Yeah. I just want to make sure there’s not duplication there, right? Okay.

J. Charlesworth: We determine which is the most significant presenting concern, and that’s what get’s coded. Does that help?

M. Stilwell (Deputy Chair): Yes.

R. Leonard: Thank you for giving some flesh to the bones here a little bit. A couple of questions. Regarding young adults with special needs and looking beyond CLBC, I was hoping that you could give me a little bit more colour about what it is that you’re actually tying to get at when you say “beyond CLBC.” Like, what are the challenges for young adults?

[9:30 a.m.]

Then, in that same vein, in terms of gaps, what is taking you to look at rural and remote communities? What is driving you into looking at those things?

J. Charlesworth: If I understand correctly, when we talk about…. Was it in reference to a particular section of the…? I just want to make sure I’ve got it in context.

R. Leonard: Page 15 is where I caught it, when we were talking about your recommendations for legislative mandate review.

J. Charlesworth: I’m going to ask Alan to answer that.

A. Markwart: I will try. This is in reference to the proposed expanded mandate of the RCY. Currently our mandate in relation to young adults with special needs is limited to CLBC services. However, in many cases, you find that these are complex cases where there are multiple issues and multiple needs involved. For example, there are social assistance and PWD. There are housing issues. There are mental health or addictions issues. There may be educational issues, employment issues.

If you’re going to address the whole person and all of the needs of that person, CLBC only provides a restricted range of services. If you want to advocate for them to better serve them, we should have a mandate to be able to speak to the full range of services that address their needs. Does that answer you?

R. Leonard: That’s what I wanted to hear.

N. Simons (Chair): Thanks, Alan.

J. Charlesworth: Then rural and remote? Was there a particular page?

R. Leonard: Yes. Again, I think, that was on page 15, just towards the bottom, in the last three lines.

J. Charlesworth: Right. One of the things we are con­cerned about is the access. We’ll talk about that quite a bit when we talk about children and youth with special needs. But it goes further than that — the access to services and timely assessment, interventions, etc. within rural and remote communities. Of course, that disproportionately affects Indigenous children and youth. That’s something that we take a look at on an ongoing basis when we are reviewing all of our data, whether that comes in from advocacy or reportables, etc.

R. Leonard: So it’s surfacing it?

J. Charlesworth: It’s surfacing it, yes.

J. Isaacs: Thank you for your report, Dr. Charlesworth. My question is just with regard to the 15 youth that are employed by RCY. Can you give us what the ages are? Is it similar to the youth that we’re looking at — 18 to 24, in that range?

J. Charlesworth: Yes, exactly.

J. Isaacs: Are they full-time or auxiliary? Just what exactly would be their specific role, as compared to non-youth that are employed?

J. Charlesworth: The primary focus is on the social media youth interns program. They’re not full-time. They are young people with experience in our system in some way, shape or form. You’re quite right — the 18-to-24 age range. When I mentioned the five videos, they’ve been involved in that. They’re now involved in podcasting.

They provide us with advice on a number of different things that we’re working on in order to ensure that we’ve got a strong youth lens and a youth voice internal to our organization. It also keeps us real when they’re walking down the halls — in ways like: “Oh, yes.” We can kind of forget on whose behalf we’re working sometimes. It’s primarily through that mechanism that we’ve got young people involved.

A. Markwart: Also, in the annual Ignite Your Spirit events, there are youth who are hired on a part-time basis to help to organize and coordinate the implementation of that. We also have three auxiliary youth engagement coordinators, who are full-time, albeit on a temporary auxiliary basis.

T. Wat: Thank you, Dr. Charlesworth, for your report. On page 57, about the community visits, I’m really glad that the representative’s office has been undertaking 35 visits to different communities.

[9:35 a.m.]

I’m just wondering. When the office goes and visits each community, how much outreach has the office done to try to get the bigger community to talk to the office and to you, in addition to working with the stakeholders?

Being the critic for Multiculturalism…. For example, going to Surrey, I wonder how many Punjabi-speaking members of the public are aware of that. Going to Richmond, since half of the population are Chinese Canadians….

How are you going to reach out to different multicultural communities? For example, the First Nations, when you go to the Interior. I just want to know your promotion outreach strategy.

I think it’s good to…. The role of the representative’s office is certainly very crucial. How are we going to get the bigger community to get to know its existence so that they can have a dialogue with your office?

J. Charlesworth: It’s a very good question. I might ask Alan to speak to the communities visited, but I can speak to where we’re going, since I’ve started, in the communities that I’ve reached out to.

Do you want to make any comment about the past community visits?

A. Markwart: Well, frankly, I can’t speak specifically to the past community visits, but I think what you’ve identified is a really key issue. It’s something that this office really needs to work on in terms of our outreach to multicultural communities. I don’t think that we have done, quite frankly, an adequate job of doing that, and we need to do better.

T. Wat: Is there a plan or strategy rolling out, how to reach out? I certainly would be willing to give my advice to the office if you’re planning….

A. Markwart: We might take you up on that.

J. Charlesworth: Just to echo Alan’s comments, that’s something that has been a concern of mine as I’ve gone out into the communities. There’s no question about that. It’s interesting, when I go into community….

I’ve done, probably, 25 community visits since starting, in the last four months. And you’re absolutely right. When I go into community, because it’s often by invitation, it’s not a representative group. So that has been of interest to me. It’s also been of interest to me that the office isn’t as well known as I would have thought it would be.

All of this we’re bringing back into our organization now to say: “Okay, well, what does that mean?” We’ve had conversations about everything from our website to the way in which we use social media to the way in which we do designated outreach. Rights Tours — how is that going to look?

When I’m in community environments and I see pamphlets that are in many different languages, I think: “Well, that’s interesting.” So there are a number of things that we’re exploring right now with the communications team as well.

You raise a really good point. We don’t do it well. Hold us accountable for doing it better.

N. Simons (Chair): Thank you, Teresa.

Next we’ve got Ronna-Rae back on the list, then Michelle, then Laurie.

R. Leonard: Following up in a similar kind of vein to that question, one of the programs that had been rolled out was engagement of Indigenous youth through that Ignite Your Spirit event. One of the challenges that I have had in supporting it was knowing the impact that it had. How was it measured? I didn’t see that. Is it the best way forward? What are your thoughts on it?

J. Charlesworth: Thank you for that question. It’s interesting, because when I first came on…. I mean, you know that I’m an old child and youth care practitioner. One of the questions I had was: “What happens for youth during and after?”

We had two very successful Ignite Your Spirit events. We’ve got reports out of those. We’re currently distilling those findings in such a way that that can be shared with this committee and beyond.

Having said that, the feedback I also got was that there are all sorts of cultural camps and engagement opportunities — spring break events, Gathering Our Voices — that are already underway. The feedback that we got and that we felt strongly about was that going forward, we actually won’t do our own independent Ignite Your Spirit.

What we’re doing is using the resources that were allo­cated to that in order to support the work that is already underway where people have long-term connections to the young people so that when they’re doing the event, there’s the before, when they know these kids; they hold these kids well within the event; and afterwards, they’ve got those long-term relationships.

[9:40 a.m.]

What we have to offer is a rates-based developmental approach, and also a way of supporting young people to understand the ways in which they can exercise their voice. That’s where we’re going to focus our effort. We’ve now been invited into many different places to begin to explore that — with the delegated agencies and the friendship centres, in particular.

M. Stilwell (Deputy Chair): My question is sort of in relation to how you’ve engaged youth to come on and be in partnerships.

On page 60 of the report, you talk about the engagement of the youth and your planned strategies and activities. When you look at your increased mandate to include those with special needs and those with disabilities, the specific planned strategies and activities don’t show anything that you’re going to engage those particular youth.

When we look at the fact that we now have almost 12,500 youth with autism that are served under MCFD and many will transition and become under your mandate that we’ve changed, how will you ensure that they have a voice? Is there an opportunity for you to…? Like you have, with Indigenous, mandated that you will have 20 percent staff, could we have one staff person, one individual with special needs or with autism, so that you ensure that that voice is being heard as well?

J. Charlesworth: Thank you for that. Great question.

Within the social media youth team, we are attentive to that and ensuring, within the young people that we bring in as interns, that we’ve got representation from different abilities and ways of seeing the world.

M. Stilwell (Deputy Chair): So you already have someone now currently? Okay, perfect.

L. Throness: I’m wondering. You’ve talked a lot about communications today. I’m simply curious as to how many communications staff you would have versus the total number of staff.

J. Charlesworth: We have three communications staff — Jeff and then two members of the communication team — and we have approximately 67 to 70 FTEs.

L. Throness: Good. That sounds rational.

On page 65, you talk about performance indicators and responsiveness. I note you said a three- to five-day window and an 86 percent response rate within the established three-day response time frame. But there is fine print there. It says that you instituted that three- to five-day call turnaround response time frame for a period of time. What was that period of time, and what was the response rate outside that period of time?

J. Charlesworth: That’s a very good question. I’m going to ask my colleague who was there during that time.

A. Markwart: The specific period of time, I believe, was in the summer. Essentially, it was a fairly short period of time. It related to some staffing issues that we had at the time and some turnovers and vacancies. That was eventually resolved, and we returned to kind of normal functioning. But it was a short period of time where we just weren’t able to meet the three-day mandate.

L. Throness: Okay. One question I had was…. The initial response time is good — three to five days. But what about files opening and closing? How long does it take to actually close a file, and is that an indicator that you should consider in the future?

A. Markwart: Well, the types of files are very different. Some are fairly short involvement; some can be quite long-term involvement. I believe, on average…. It would probably be better if we got back to you with a specific figure, but kind of off the top of my head, I believe the average is about six months.

L. Throness: But you wouldn’t recommend a performance target on that?

A. Markwart: No, because it depends on the nature of the case. Some cases are extraordinarily complex. It requires some long-term involvement. Others are short, focused issues that can be resolved in a fairly short period of time. So you can’t set a target.

L. Throness: Okay, that’s fair.

[9:45 a.m.]

J. Charlesworth: Can I just actually add to that? I think — and you’ll hear this as we speak about the ministry — that file closure as a metric is actually a problematic metric. Then it becomes about, “Oh, we need to close a file,” rather than what’s being called for. And in some cases, we’re in relationship with the kids as advocates for years.

L. Throness: That’s fair.

One final question, Chair, and that’s on page 70. I note that on the budget and expenditures, you kept within your budget, so I commend you for that. There’s one thing. Research grants for 2017-18 was $388,000. Budgeted was $5,000. Could you explain that huge difference?

A. Markwart: Yeah, I think so. Approximately two-thirds of that funding went to the McCreary Centre Society, which is…. Well, it’s well known for doing the school survey of children’s issues. We’ve provided ongoing grants to them. They are a primary source of assistance to us and a primary source of data.

For example, they have what is called the Youth Research Academy, which is actually former youth in care who are retained by them. They’re trained and supervised by them to assist in research projects, to help in youth engagement projects, for example, and focus groups. We provided funding for that. We’ve provided funding to them to help with some specific projects around, again, getting youth input, because they are expert in that area.

There are some other grants that have gone out to other various agencies. We can provide you a list, if you would like a list, of what those grants entail.

L. Throness: Sure, why not.

A. Markwart: Part of it, too, quite frankly, is that we have had some surplus year-end funding. So we’ve had a capacity to do that. Part of the reason for the surplus year-end funding is, in my view, we haven’t actually managed our budget as well as we could, and that largely relates to staffing.

Historically, we only staffed to our maximum number of FTEs, which is, in fact, 65. We are now over-staffing, because we did take into account attrition and recruitment lag, so we always…. We had a history of underexpending in staffing dollars.

We’ve now corrected that. While we may have had, for example, 65 FTEs — it used to be 61 — we only burned, or used, 55. We’ve corrected that so that we will now be actually using, or burning, our full FTE complement. Therefore, we won’t have that same capacity in the future to give out research grants. I can certainly assure you that this year we won’t, because we’re running a very tight budget.

N. Simons (Chair): Thank you, Members, for your questions, and thank you, Jennifer and Alan, for your responses. I think that closes our discussion on the service plan.

We can now move to the second item on our agenda, the consideration of the report, Time to Listen: Youth Voices on Substance Use. I don’t know if you want to call the researchers up, or the report writers and investigators.

J. Charlesworth: I’ll ask Carly and Monique.

N. Simons (Chair): Carly and Monique, yes.

Thank you very much. I guess we’ll start with an overview of the report, followed by questions.

Time to Listen:
Youth Voices on Substance Use

J. Charlesworth: Great, thank you. I am very happy to be bringing this report to the committee.

This one deals with a subject that’s all too prevalent in our province today. Our province is in the middle of an ongoing overdose crisis, as is the rest of Canada, of course, but parti­cularly acute here.

[9:50 a.m.]

In 2017 alone, 1,452 people lost their lives in this province. Of these, 24 youth — double the number of youth from the previous year — died by overdose.

In the first 11 months of 2018, according to figures provided by B.C. Coroners Service, there were 1,380 suspected illicit drug overdose deaths. Of these, 16 involved youth under the age of 19.

The Time to Listen: Youth Voices on Substance Use report took a youth voice approach to this issue. The report reflects the experiences of youth and their suggestions for changes that can improve their safety and well-being.

This project strengthened my belief that B.C. should be building a comprehensive array of prevention, early intervention, care, treatment and post-treatment services for youth and that harm reduction must be a key component of that spectrum of services. Quite simply, bold action is needed to tackle this difficult and extremely complex issue.

The lack of accessible services available to youth who use substances has been a significant concern of this office for many years and was the subject of several reports released by my two predecessors. Two years ago, then provincial health officer Dr. Perry Kendall declared a public health emergency over the alarming number of people dying from overdoses, and the current provincial health officer, Dr. Bonnie Henry, concurs that the emergency is far from over.

That same year then representative Mary Ellen Turpel-Lafond released a review of publicly funded youth substance use services. This contributed to the creation of the new Ministry of Mental Health and Addictions in July 2017. Our latest report, released on November 15, was timed to help inform the new ministry’s mental health and substance use strategy, which is now under development. I expect we will see that shortly.

Our report added the important voices of youth to the ongoing dialogue on the current overdose crisis. We wanted to hear firsthand from young people who are using substances what their lived experiences are like. This report reflects the perspectives of 100 youth across B.C., engaged, actually, through McCreary, which we just spoke about. These young people participated in focus groups, completed surveys and offered their views on substance use and their suggestions about what could be changed to make them safer.

In addition to the perspectives on youth, the report included the views of many professionals who work on the front lines, including those working in shelters, in treatment programs, in street-level outreach, etc. It also incorporated the findings of an aggregate review of the 154 substance-related critical injuries and deaths that were reported to us in 2017 by the Ministry of Children and Family Development.

I think one of the things that was most striking for me was the first reason youth gave for using. It was to numb the emotional pain that they had been caused by the events in their lives or from past trauma. The substance-related injury and death files reviewed for this report found that 86 percent of youth had experienced at least one known measure related to trauma in their lifetime. I suspect that if we actually investigated specifically with the young people, it would have been 100 percent.

By “trauma” we mean such serious harms as witnessing or directly experiencing violence and death in their families or communities; physical and sexual abuse; sexual exploitation; experiencing significant mental health and substance use concerns, either personally or within their families; suicide attempts; loss of family, cultural and community connections due to in-care experiences and multiple placement moves; separation from siblings; crisis-based hospitalizations. This is not small stuff.

This trauma is often all on top of social risk factors such as poverty, unstable housing, interrupted schooling, lack of timely health care and intergenerational trauma and racism.

One clear finding of this work was the importance of positive connections in the lives of youth who use substances — connections that can improve their health and wellness outcomes. We know that when young people have strong connections to supportive adults and peers, when they have access to community support such as schools and mental health services and to their culture, they’re more likely to develop coping mechanisms and find protective factors in their lives that reduce the barriers to safer substance use.

Another key finding of this report is the need for foster parents to have the skills to effectively communicate and care for youth who use substances. Youth said that this would lead to fewer conflicts and problems and the consequent foster placement breakdown that all too often arises.

[9:55 a.m.]

When I was reflecting on this, I thought it’s important to note that many parents in B.C. are working through, supporting and standing by their young people who are struggling with substance use issues. Unfortunately, too often when the state assumes the parental role, those charged with caring for them are not standing with these children and youth through the ups and downs of substance use. Placement breakdowns come from a place of fear, conflict and lack of knowledge, skills and supports. As one youth said: “We need more family and less fear.”

Youth also spoke to the importance of schools being able to work with students who are struggling with substance use, rather than expelling or suspending them. As one youth said so poignantly: “Stop exiling youth that are using.”

Importantly, Indigenous youth who participated spoke about the need for culturally relevant and safe substance use services. Said one participant: “Culture helps you to have a sense of belonging and a sense of identity.” We know that these are antidotes or healing salves for the emotional pain that contributes to substance use.

Together, the findings in this report point to the need for harm reduction to be a key component of the wraparound services.

Our report made five recommendations to be considered as part of the strategy to address substance-related harms. Each of these was driven by a youth voice in addition to the aggregate data and the literature, research and analysis of strong and promising practices. I’ll go through each one and then provide you with a status report from the various ministries.

The first recommendation was for the Ministry of Mental Health and Addictions to ensure that a commitment to youth engagement is embedded in its mental health and addictions strategy. This engagement should account for the diversity of youth who use substances, and youth feedback should inform the implementation of their services.

The second recommendation was for the Ministry of Mental Health and Addictions, in partnership with the Ministry of Health, to lead the creation of an accessible and youth-friendly single source of information about all provincially available youth mental health and substance use services.

On that note, youth told us about the challenges of finding information about available mental health and substance use services. Many of their concerns were intertwined, and our staff experienced similar challenges when gathering information on publicly available services for this report. In fact, we’d intended to provide and include, as an appendix, a comprehensive inventory of programs and services to update the 2016 information. But we were not confident that we had a firm understanding of the baselines, so we continue to work on this with the health authorities and the ministries.

The third recommendation was for the Ministries of Mental Health and Addictions and Health, in association with their partners, to lead the development of, and ensure the funding for, a comprehensive system of substance use services. This was the most substantive recommendation. Within that, specific attention should be given to the development of culturally relevant and culturally safer services and supports for First Nations, Indigenous, Métis and Inuit youth and their families.

Our fourth recommendation was that the same two ministries lead the development and implementation of a full spectrum of youth-specific harm reduction services. These services should include supervised consumption embedded within a system of wraparound services and supports that focus on harm reduction.

I recognize that this recommendation, in particular, is controversial. In fact, other advocates across the country told me I was nuts. But we must face the reality today that too many youth in B.C. with significant substance use issues are overdosing, and tragically, some are dying. Many are not safe in part because of the inadequacies of the current system of substance use supports and because we simply are running out of options. Additional help must be offered to make these young people safer.

We need a comprehensive system that offers a wide range of services — of course, from education and materials to encourage safer substance use to easy-to-access information about services, right through to safe consumption — that keep youth connected to those adults and supportive, positive, healthy peers and do not force them into adult sites or alleys.

The report’s final recommendation called for MCFD, in partnership with the Ministry of Health and relevant youth-serving organizations, to develop a comprehensive training program for foster care givers to help build skills for open dialogue with youth about substance use and to support them in caring for them through their journey. As one youth told us: “If you’re in foster care, foster parents should know about substances. There is zero tolerance in lots of homes, but it should be like your family. You should be able to talk without anger or getting kicked out.”

[10:00 a.m.]

Training for foster parents should consider the impact on youth of trauma and intergenerational trauma that has resulted from colonial policies. The goal here is to improve relationships and understanding and to help ensure that youth are not removed from homes strictly as a response to substance use.

Those were the recommendations. I’m happy to report that we received feedback from all of the ministries — both in this report and the subsequent one that we’ll talk about — and they’ve accepted the intent of all of these recommendations and pledged to act on them.

Of course, some — such as the inclusion of safe consumption as part of a harm reduction approach — understandably require further research and discussion, but the ministries are quite willing to keep working with us to ensure that the spirit and the intention of those recommendations are fulfilled. Of course, we’ll be closely monitoring action taken on each recommendation and the impact of those actions.

I’m also pleased to report that this has prompted wide public discussion, not just within the sector but also within the broader community, and, within the public discourse, a discourse with parents and families. That’s an important thing to elevate these kinds of issues into the public discourse, not just into the service-providing stream. I’m encouraged by that. Even when people disagree, it’s important that we have these conversations around complexity.

Youth have spoken through this report, and it’s heartening to me that decision-makers are listening to them. So that’s the high-level overview. I’m sure you’ve got lots of questions, and we’re happy to answer them.

R. Glumac: Thank you very much for the report. Just a quick question to start.

When you’re saying that the ministries support the intent of the recommendations, that doesn’t tell me very much. Either they support them, or they don’t. I wonder if there could be more clarity on that and, specifically, I guess, with recommendation 4, whether the ministry, after they have some time to look into this recommendation and research on other practices around the world, would be able to comment on it more clearly.

J. Charlesworth: A couple of things. One is that this was released in November, so it’s still pretty early days.

The other thing I want to speak to is the notion of spirit and intentions. This is somewhat different, perhaps, than my predecessors. What I have said to the ministers and the deputy ministers and senior staff is that we are making…. We go through quite a process now in terms of crafting the recommendations, maintaining our independence but really understanding that if we use certain language or if we frame things in a certain way, are we making sure that the intention, the aim that we have to support the well-being of young people, is actually coming through?

What I have said to the ministers and the deputies, etc., is that in these recommendations, the most important thing to me is that you live with the spirit and the intention. What’s our primary aim here? If you can come back with a better alternative, then: “Great, come and talk to us about it.” Sometimes we don’t know the fulsome nature of the service delivery system and the way that it’s evolving in a rapidly changing area like substance use or opioid overdoses, so I’ve asked them to come back if they have a better option.

That’s a long-winded way of saying that when I say they’ve accepted the spirit or the intention of the recommendations, they’ve said, “Yes, we will fulfil these recommendations, and we may come back to you to say that the intention you’ve got” — which is the well-being and safety of youth, strong connections, wraparound, etc. — “can be done through this direction,” which might be a little different than what I have proposed here.

R. Glumac: Okay. What is the timing of that, do you think?

J. Charlesworth: For a number of these, we lay out time frames for each of the recommendations now, because I think it’s important for accountability that we have timelines. The Ministry of Mental Health and Addictions, for example, should be releasing its report or its strategy in the coming months. Certainly, we’ll see signals in the budget presentations coming up in February.

Following the release of the budget and of their strategy, then they’ll give us some more refinements as to the timelines that they’re going to be putting forward. But we have said the full spectrum of youth harm reduction services must be in place by March 31, 2020.

[10:05 a.m.]

C. Hyman: Just to add to that, after each report is released, when recommendations are issued, we’ll be meeting with each of the public bodies that received the recommendations. They’ll be developing an action plan for implementation of each recommendation.

J. Charlesworth: To that point, we will be meeting with them within the next month in order to do that.

L. Throness: I have two broad concerns that I’d like you to comment on. I read the entire report, and with some degree of sadness, because the stakes are so very high.

I feel that our society is deeply conflicted about recreational drugs. We’re trying to push and pull at the same time. Some want to accept addiction and to reduce its harm. Others want to fight addiction and get to recovery and freedom from addiction. There are sort of those two poles.

All public policy is a matter of emphasis. I would never say that there should never be harm reduction. A harm reduction person would never say that there should not be any long-term treatment, but it’s a matter of emphasis. I notice that your report has gone heavily emphasizing harm reduction, which has been the course of the government over the past four or five years during this opioid crisis. Yet the death toll continues to rise.

We’re not doing anything different. I would’ve thought that bold action would have been for you to recommend more detox and more long-term treatment leading to recovery from drugs as a way of arresting the rising death toll. I’m wondering why you didn’t do that.

J. Charlesworth: Well, actually, we did do that. Recommendation 3….

L. Throness: You didn’t have a recommendation. You had a recommendation for safe consumption sites but no recommendation for more detox and recovery from drugs.

J. Charlesworth: Well, the recommendation that says that “comprehensive system of substance use services capable of consistently meeting the diverse needs of all youth in the context of the broader…continuum of care.” What that includes, as in the narrative, is everything from education right through to intensive treatment and support.

We absolutely agree that there needs to be more, a more comprehensive system. We hear from young people saying that when they want treatment, it’s not readily available. That’s problematic.

I don’t want to focus just on safe consumption as that being the fundamental piece. It is part of a broader continuum. I couldn’t agree more that detox and treatment is critical.

A couple of things I do want to say. It’s interesting, the language that we use. But I think it’s important that we not use the term “recreational drugs,” because that suggests that it’s more frivolous.

What we’ve got are two things going on. That’s why it was such a sad thing to learn about the way in which drugs are being used to numb emotional pain and the level of trauma that young people are experiencing. So this is about survival and coping with ongoing trauma that is not being addressed. That’s one thing.

The other thing that I think is very problematic for us in British Columbia, particularly, is that the drug supply is toxic. We have unprecedented levels of toxicity in the drug supply. It heightens addiction, and it heightens risk. We’re in this unprecedented place, that we don’t fully know how to deal with it.

The reason that these recommendations…. It came to the place of: we need a comprehensive array of services. Absolutely. We don’t have enough. We hope that that will be addressed with the strategy coming forward. But we also need to be willing to take a look at those situations in which we want to keep kids alive long enough that we can start to build relationships and knit them back into greater well-being and intervention.

N. Simons (Chair): We’ll do Rachna.

I know you have another question, Laurie.

R. Singh: I just wanted to thank you — this report and the length that you have gone to. I’ve worked in this field, and I know the complexity of drug abuse and how it affects everybody, especially in our vulnerable populations and youth in care, especially.

I really, really like the recommendations that you have made with the harm reduction. I agree with Laurie, too — and you have explained it very well — that we need more resources for everybody. Especially with this population, we feel they fall through the cracks much more often than the broader population. Thank you so much.

[10:10 a.m.]

My only thing is like these recommendations…. You have said about 2020, but you need to keep on pushing for it. I know it requires a lot more…. You are doing the advocacy but at a much more aggressive level to achieve what we want. So thank you.

R. Leonard: We could talk about this all day.

J. Charlesworth: We could. We’d love to talk about this all day. It’s such an important issue, as Rachna has said.

R. Leonard: Yeah. Okay, a few things. You know, what I recognize is that we’re talking about a population that has some difficulty with coping skills. Dealing with substance use as a way of coping is perhaps, obviously, not the best solution.

You talk about the toxicity of substances out there that are being used, and I think that’s most telling in your graph for critical injury and death. Number 1 was heroin, and No. 2, alcohol, which is one of the things we shouldn’t be forgetting about, and then fentanyl.

Then if you go to page 17, the substance used most is alcohol, and the opioids are way down at the bottom. It shows that just a few bad moves can risk critical injury or death. I mean, it’s a pretty telling thing.

As I’m looking at all the statistics and everything, I start thinking what…. I sort of feel like it’s not just about the numbers game. So having the kids’ stories is good.

I’m also interested…. I didn’t get quite a strong sense of what kinds of agencies you were talking about — what’s out there in terms of helping. I know that Foundry has been around for a couple of years now, starting in…. Was it 2015, 2016?

J. Charlesworth: It’s been in development for a period of time, but they’ve really just opened in the last year or so.

R. Leonard: Yeah. How that’s going — and other agencies which are dealing with all of these issues. If you could talk a little bit about the research that went in and the conversations that happened with agencies. I just wanted to…. You say you had the feedback from them, but I’m interested in their engagement in the development of this.

Then the one thing that you talk about in schools. That’s the heartbreaking thing. I know that in loco parentis, they’re supposed to be looking after all of the children as parents. I can see that the expulsion of kids is for the safety of the other kids and trying to deal with that. Just in terms of….

N. Simons (Chair): Do you have a question?

R. Leonard: The question is: were there any responses around peer support, both in schools and in different agencies, as a way of moving forward? We know about peer pressure and bullying. Do we see any sense that peer support would help?

J. Charlesworth: Okay.

R. Leonard: There are a few things in there.

J. Charlesworth: There are a few things in there. Let’s just do a little huddle and figure out….

Is there something you’d like to add in terms of the engagement?

M. Auger: Sure. I can speak broadly to the methodology that’s reflected in this report. And then maybe you could add on the conversations that are still ongoing, which would primarily be with the community-based organizations and agencies.

J. Charlesworth: Perfect.

M. Auger: Within this report, there were two groups of youth that are reflected through the different forms of data, including Youth Voice. One was the focus groups. That included the hundrED youth, over 18 focus groups that McCreary engaged with across urban and rural communities across B.C.

All of the qualitative data that you see is primarily from those youth that are speaking. When you talk about figure 5, looking at the substance use among survey respondents, that is from the majority of those youth that were participating in the focus group.

We also had an aggregate of the data that’s collected through the reportable circumstances that are submitted to our office, which primarily prompted this review as well. That is from the other graph that you are speaking about in terms of the rates of substance use — figure 1, from page 14. So they’re actually not comparable when you’re looking at the different substances. Those are different groups of youth, right?

Yeah, I guess, primarily, youth are the centre of this report, and we’ll have ongoing conversations with the monitoring team as well, working with the different health authorities and community-based agencies.

[10:15 a.m.]

J. Charlesworth: In terms of the engagement with community-based agencies, I mean, we have the privilege, really, through our work, to be constantly gathering information, anecdotal often. But we’re also gathering feedback from the various agencies about what they’re seeing, what they’re experiencing and the struggles that they’re facing.

As an example, we released this report at Directions Youth Services, which is just on Burrard and is a stellar example of a youth hub that brings together and creates a sense of belonging and connection to the young people that we’re talking about that are experiencing some of this trauma and challenge.

Those are the kinds of places that we reach out to — Broadway youth resources. There are Foundrys in a number of communities now, etc.

Does that answer your question on the engagement piece?

R. Leonard: Yup.

J. Charlesworth: The education piece, just to speak to that. We will speak about it a little bit more, actually, when we talk about children and youth with special needs as well. That is the 8:30 to 3:30 or nine to three. That’s a significant part of a young person’s life. There is an incredible tension for educational institutions because they are trying to keep all youth safe. Sometimes the well-being of the whole trumps the well-being of individuals.

Having said that, I think that education is a right, and the opportunity to have meaningful engagement during the day is an important way of us staying connected to the kids. So taking a look at what is the role of the education system going forward, including an alternate of education options, is very important.

I hope that answers your question.

J. Isaacs: I appreciate the report and the input, particularly the input from the youth that contributed to the focus groups and raised their concerns.

I, too, was really saddened by the report. It’s very sad. It’s multigenerational, and it seems to be a bit of a vicious circle. I’m not sure how you break that. It’s not a simple solution. That’s for sure.

I did kind of get the sense that children and youth will see it from their perspective. But I’m wondering and worried a little bit that the rights of the children may supersede the rights of foster parents. So I’m concerned just about where that balance is off.

I’m wondering what the current policy for drug use is now in foster homes, if there’s any kind of reporting that foster parents are required to do and if there’s any onus if that’s a requirement. Also, what is the liability to foster parents, especially if there is a critical injury either directly or indirectly from the drug use or a death?

How would foster parents safeguard other foster children or, in fact, their own children in their home if someone is using drugs in the home?

J. Charlesworth: All great points. I don’t know about the drug use policy for foster parents. We can certainly follow up and provide that for you. I think that’s a good point.

A couple of things. First of all, you’re absolutely right that trying to figure out how you create an environment in which all children in a foster home are safe. If the young person is using, then how does that impact on the other children? Absolutely.

What that suggests to me is not that then we have to remove that child. But perhaps we have to take a look at the ways in which we select foster care givers, place the children who might be using and support those foster care givers. If you speak with many of the foster care givers, they feel…. They’re frightened. They don’t have the information, and they don’t feel well supported.

So a young person comes, they find out that they’re using, and it’s like: “Oh my goodness, that wasn’t part of the bargain.” What that says to me is a couple of things. What are the processes for recruiting foster care givers who have the knowledge, the skills and the abilities in order to meet these children where they’re at and support them? What are the decisions that are made about the appropriate placement and fit? When issues arise, what are the supports and services provided?

[10:20 a.m.]

If we go back to understanding that these kids are often using to numb emotional pain and that they have experienced trauma, we will be adding to the trauma if that placement breaks down and now they’re moved again and again and again. Or if they’re put in situations where they’re in a shelter, something like that…. That is not a home. That’s not a viable placement, in my view. That is a temporary placement.

I think what it does is invite us into thinking about: how are we going to create a foster care system that actually welcomes and embraces these kids, supports them and doesn’t put other children at risk? You’re absolutely right. That’s not an either-or.

The other thing is that I think in terms of…. Of course, foster care givers and parents have rights as well. But we also have to ensure that the rights of vulnerable children and youth or the rights of the people that we’re talking about here — we are responsible for them, and society — are the most important rights that we have to put front and centre. Then we have to figure out how to create a system around them so that the rights and well-being of others are honoured as well.

J. Isaacs: I appreciate that. I think we all understand the issue, the matter, and how complex it is. I’m just wondering: is there a liability for a foster parent? I mean, we do have a shortage of foster parents now. Recruiting, under that criteria, is going to be even tougher, right? So they have to pretty much have that education piece, that skill set, before they even enter into foster care, because it’s obvious it’s going to come up. Most of these children are vulnerable for whatever reason, and as you say, the drug use is a way of managing their own pain.

At some point, it’s going to be expected, so we do have to provide the training and the skill set for foster parents to work with that child. But what liability do they have if there is a critical illness, directly or indirectly, or a death?

J. Charlesworth: Well, that’s a very good point. I mean, for any foster care giver, there are concerns about the well-being of a child in their care. On that pragmatic sense, there is liability insurance, and it’s an indemnity provided by the Ministry of Children and Family Development. That’s one thing.

The other thing, though, is the…. I guess there’s another characteristic here of: if there’s negligence or if there is a lack of oversight provided by the caregiver, whether that’s a foster care giver or a residential care provider, a contracted provider, they still have the onus of responsibility to ensure that they are able to provide that care. That’s one thing.

The other thing I want to say is what we’ve found, even since this report, is that there are people that are coming forward to say: “I am willing to be a foster care giver that has a specific focus on harm reduction and for this population.”

I think it’s actually trying to make sure that there is good recruitment of people. Not in a generic sense — you’re a foster care giver, and you could provide care to a six-year-old or a 14-year-old with an addiction — but you are a foster care giver that we are seeing specifically has the skills and abilities to provide services to those kids. Much as we do for safe babies, for example — chronic addicted or fetal alcohol, etc.

I don’t know if that answers your questions.

J. Isaacs: Yes. It’s very helpful. Thank you.

N. Simons (Chair): I’ll just also point out that foster parents, any caregivers, are required to report any incident that might result in harm to the child. So there’s a system of reporting. Presumably, that report would result in additional attention from the ministry should that be necessary.

J. Charlesworth: You raise a very good point. For a foster care giver to be able to phone and say, “I need help now,” is critically important. So part of that comprehensive array. If we’re going to do this well, we have to be able to wrap around, and that includes wrapping around the caregiver who’s trying to provide that positive emotional parental connection.

N. Simons (Chair): There was a time, I might add, that social workers were often recruited for specific skills. There were different levels of foster care, where special skills were required to look after children with specific needs, I guess we’d put it.

T. Wat: Thank you, Dr. Charlesworth, for your presentation and for the staff in the taking of this report. I must say that I totally echo my colleague Laurie’s emotion. Some of the questions I want to raise actually were raised by Joan.

[10:25 a.m.]

It’s so painful and so heartbreaking to go through the report the last couple of days. I know that right now the safety of the youth and children is of primary importance to all of us. But I just feel that if we don’t try to treat youth and children when they’re young and we are going along the line of harm reduction, our society is going to kind of encourage addiction to drugs and other substances for the rest of their lives. I don’t know what it will lead to.

I do totally echo Laurie’s philosophy that we should try to go for the recommendation of detox and treatment. Otherwise, it just doesn’t give the right kind of thinking to our youth. I know that we have to respect the rights of every individual if they want to abuse substances. We can’t say that you have to go for the abstinence program. But what leads to the future of humankind…? I just start to wonder.

Also, another point is…. I saw in your focus group that some of you say that if they return to their parents or to their foster parents, if their environment is still…. If they see substance abuse, it’s not easy for them to stay away from substances. So in addition to the question that Joan asked, I wonder whether we screen the foster parents. I don’t know whether it’s politically correct to ask them: do they have substance abuse? Should they put kids and children into foster parents that actually, themselves, are abusing substances, so that when the kids are under their care, they are in that kind of environment?

J. Charlesworth: A couple of things. I’ll also welcome any feedback in terms of bringing the youth voice into this one.

First of all, in terms of foster parents, there is a very thorough screening process for foster parents. There would not be foster parents that would be approved to provide care for children who are actively using illicit substances. Not to say that sometimes that doesn’t happen, but when we’re aware of those things, we definitely see action from the ministry to review the situation and often closing homes if that were to be the case.

I think you raise an important part about familial substance use, though. If a child goes back into their family home and their parents are continuing to use — or their siblings, etc. — that is extremely difficult. As part of that compre­hensive array, it becomes very important to begin to think about the child’s context and what’s going on for them and where those appropriate support connections are. Ronna-Rae talked about that notion of how you ensure that they’ve got the capacities to cope with that. So it does speak to the importance within this of thinking about family support as part of the comprehensive array as well. That’s one thing.

I want to push back a little bit in terms of…. Harm reduction does not encourage addictions. It doesn’t encourage long-term substance use. What we hear…. Harm reduction specialists will tell you that this is an opportunity to meet someone where they are at in this point in their journey so that (a) we keep them alive, and (b) we build the connections so that then there’s a pipeline into other services and supports that will support them in their healing journey. It may be a short period of time; it may be a lifelong piece. But harm reduction in and of itself does not encourage addiction.

I think that’s important for us because I think there are a lot of comments there, and as you say, this is heartbreaking. So I’m very grateful to all of you for reading the report and feeling what we felt around these young people.

Does it make me happy to think that we have to be in a situation where we’re encouraging safe consumption? No, it doesn’t, but what it says is that this is the reality, and what we have to try and figure out is: how do we keep those kids in our orbit and alive so that we can start to knit them back into the system? It gets to the point that Laurie raised, too, about where we bring them back into the system when they’re ready.

[10:30 a.m.]

Many young people that I’ve worked with over the years say: “I don’t like this. I don’t like feeling out of control and giving over control to these substances, but I don’t feel like I have a choice right now.” So we’re trying to amplify the choices.

I don’t know if there are other things you want to add, bringing the youth voice, the youth perspective in.

M. Auger: One of the other things I heard when you were asking your questions was around the importance of prevention and early intervention. I just wanted to highlight that the recommendations that were formed by this office are not the only recommendations that were posed by youth.

Throughout each of the sections, we have different suggestions from youth around supporting safer use — in particular, around community connections. They spoke so much about the importance of supports in schools, the importance of counselling, the importance of having youth-specific spaces, including detox and other forms of intervention.

I just wanted to highlight that the youth had so many suggestions. We couldn’t possibly form a recommendation for each and every one, so we tried to have recommendations that encompassed them more broadly, including the one around the comprehensive continuum of the services.

J. Charlesworth: Thank you for your questions.

N. Simons (Chair): Well, I’ve put myself on the list.

I really appreciate the insight that you provide. One thing I was pretty surprised by was that there was no reference to queer children or youth. There was no reference to the LGBTQI2 community or trans community, and I think that when you look deep into the issues around trauma, you have issues related to young people’s identity. What I did notice, also, was the importance of supportive adults. What it seems to me is that we have work to do in terms of reducing the trauma and creating resilience in young people. Some people say: “Well, we start at harm reduction.” Well, we don’t start at harm reduction. We can start at harm prevention.

J. Charlesworth: Exactly. Right.

N. Simons (Chair): When we have strong families that are capable of meeting the challenges of their children, presumably we have systemic ways of creating resilience as well. In the school system, in the words of public officials, all of those things have an impact on whether a child feels supported by their community. Ultimately, that is what every child needs. I wondered if you could comment on those points.

J. Charlesworth: Good point. First of all, issues of identity, sense of belonging, etc., are absolutely critical. You raised a very good point about queer youth, LGBTQ2S+.

Interestingly, that is something we’ve been talking a lot about in the office. In fact, we are now monitoring, for example, the critical injuries pertaining to transgender, non-conforming gender, non-binary, and looking at that in a more systemic way. It is something on our radar. In fact, if you go through our reports, we actually have been quite silent on that, not talked about it at all. That was one of the things my daughter raised with me, actually, when I got this job. She said: “Mom, as a queer woman….” She’s a queer woman. She said: “You’ve got to take some measures in that regard.”

That’s one thing — to speak more systemically about our work. Of course, we do see a higher number of queer youth, particularly trans youth, in our reportables pertaining to suicide and less so around substance use injuries.

I don’t know if there’s anything you wanted to add in terms of this report.

M. Auger: Yeah. I’d like to acknowledge that that is a limitation of this report — that we were not the ones that had the pleasure of actually working with the youth. So it’s hard to know what was actually talked about in the room. We do know from the survey respondents that 6 percent of those that completed a survey did identify as a non-binary gender.

Then, also in the survey, on page 36, they were asked about LGBTQ2S+ services, and 17 percent had accessed a service at some point, and 85 percent of those people found that to be helpful. But again, in terms of survey responses, we don’t know to what extent…. We don’t know what the gaps were, so I think that that is definitely something that we need to further explore.

N. Simons (Chair): I think it just fits into the discussion around trauma — societal trauma, familial trauma or community trauma.

We have a few minutes. If you want, Laurie has got another question.

[10:35 a.m.]

L. Throness: I just want to follow on with what my colleague was talking about with regard to foster parents.

In my critic role, I met with south Island foster parents, about 25 of them, before Christmas. They said that they had undertaken a recruiting drive to find more foster parents, and they couldn’t find any who would be willing to take in teenagers. This is a very difficult group to recruit foster parents to.

My concern is that if this training will be required, as your recommendation says, for all foster parents, to begin on October 1, some foster parents will regard this as pressure to accept drugs into their homes, and some are going to quit. We already have a huge shortage of foster parents. It’s going to be an obstacle, also, to recruit foster parents.

Is it your intention, through this recommendation, that foster parents be required, at some level, to accept drugs into their homes?

J. Charlesworth: No. That’s not the intention at all.

A couple of things about this. One is that, yes, recruitment is a huge challenge. I think it calls upon us to re-imagine foster parent recruitment. But it also speaks to: what do we do to prevent children from coming into care in the first place? That’s a whole other conversation.

In terms of access to this information or access to this training, it’s not about suggesting that this means, therefore, you will take young people who are substance users. But the reality is that many of the children who come into care have been impacted by substance use somewhere in their familial history.

The idea of having the training is to understand what substance use is about, what its origins are, the impact that it has on physical, emotional and mental well-being and how that adds to the trauma so that then the foster parents have an understanding that is less about reactive fear and more about understanding it from the point of view that this is present in our society, and it’s particularly present in the lives of the young people that we’re serving.

You might be only caring for children under the age of six. But their parents may have been affected by substances. They themselves, as little ones, might be affected by substances directly — from use in utero, for example. It’s about trying to make sure that the system gets smarter about what’s in our midst, not to say that, therefore, that foster parent must now take young people who use. I hope that clarifies.

Did you want to add something?

C. Hyman: I’d just add that Ministry of Children and Family Development doesn’t require foster parents to complete training. So while this training will be available for all foster parents, and while our hope and intention is for foster parents to complete it, they won’t be requiring it. Our intention wouldn’t be that it would result in foster parents quitting as a result.

N. Simons (Chair): I’d also point out that foster parents are never required to take a child or to have a child placed in their home. There’s a discussion that takes place, and there’s a compatibility issue that’s always attempted to be addressed. It’s not like there’s a: “You take the next child that comes into the office.”

I can’t see any situation where you would suggest that educating a foster parent on a current issue in society is ever going to be negative. If, in fact, simply being educated on the issues around drug use and drug misuse is going to cause someone to reject the idea of looking after a child whose life may have been impacted by drugs or whose future may be impacted by the presence of drugs, I couldn’t see that as a negative thing at all. But I really appreciate the discussion. I know we all know the relevance of this issue in society today.

I’m interested in trying to figure out, eventually, how we create resilience, what the best ways are for our society to institutionalize the development or the nurturance of resilience in our children and youth, because then they can overcome some of their own parents’ or family’s issues. They can thrive otherwise, and we won’t have to think about harm reduction or detox.

J. Charlesworth: It’s a critical question for us. How do we…? One of the things that we’re looking at is: what have we learned, in terms of things that are making a difference, in terms of resilience?

We’ve even been having a conversation…. For example, another group of young people that we’re very concerned about, where there’s tremendous complexity, is Indigenous girls. We’ve been saying: “Okay. Well, we can take a look at those where there are lots of critical injuries, for example.” It’s like: what’s going on for them?

Then one of the CID teams said: “Well, what if we looked for those young people who we had lots of critical injuries with and now we’re not? What’s happening for those kids to be coping? Are they coping better? What’s happening, and what can we learn?” There are a lot of young people who have overcome extraordinary adverse circumstances, and we can learn from them as well.

It’s an important conversation for us around resilience. As I say, one of the patterns for us is: what do we need to do to back up the bus so that we aren’t into this place where we’re starting to agonize around something like safe consumption or harm reduction?

N. Simons (Chair): I just want to thank you again for answering our questions.

Thank you to all committee members and community members for your interest and your questions.

I think it’s time now that we take a ten- to 15-minute break — a 12½ minute break.

The committee recessed from 10:40 a.m. to 10:53 a.m.

[N. Simons in the chair.]

N. Simons (Chair): Thank you very much, committee members, guests, witnesses and everyone. We are at item 4 of our agenda, which is the consideration of the Office of the Representative’s report Alone and Afraid: Lessons Learned from the Ordeal of a Child with Special Needs and his Family, from December 2018.

Once again, we welcome Jennifer Charlesworth to provide us with an overview.

Alone and Afraid: Lessons Learned
from the Ordeal of a Child
with Special Needs and His Family

J. Charlesworth: Thank you very much. It’s such a treat to be able to present all these, share with you what we’re working with and introduce you to the team here. These folks have lived and breathed this report for many months.

The final report I’m going to present to you today is the result of an investigation by our office — it’s a little different than the others, but this is more familiar to this committee, I’m sure — into the ordeal experienced by a young boy with complex special needs and his family, who did not receive the support and services that they needed. The report details what happened to Charlie, a pseudonym, when he passed, largely unseen, through the very system designed to protect and support him.

While this story is about Charlie and his family, it’s very important that you know that we’ve situated this within the context of what we’ve learned about the broader CYSN, child and youth with special needs, system. It’s because these are lessons not just about this case but about many situations that families are experiencing. These families face similar challenges in trying to access supports and services.

[10:55 a.m.]

Of course, we’ll talk about that a great deal more this afternoon, but what we wanted to do was to provide this single lens into the human experience of a child or youth with special needs. This is an important way for our office to help improve the system and make things better for other children and families going forward.

Charlie’s father, who was interviewed a number of times by our investigators, put it best when he said: “Let’s not let this happen to the next child that’s going to be going through this and the next family that has to go through this.”

Charlie was 12 years old when he was removed from the care of his mom in January of 2016, and he weighed just 65 pounds. Think of the 12-year-olds in your life. Suffering from profound neglect, he’d endured years of malnutrition and inadequate and sporadic services to address his extreme special needs and had had little education and socialization.

Records show that he arrived at the hospital terrified and clinging to the paramedics. In fact, some of the first responders — who found Charlie alone, naked, unable to walk and living in a bedroom covered in garbage and feces — were traumatized. A child with autism spectrum disorder who does not communicate verbally, Charlie had been screaming for half an hour before they arrived at his home. He’d reached this shocking state despite his family being known to MCFD since 2006, when police first alerted the ministry after visiting the home to investigate an argument between his parents.

There were eight formal reports, in total, to the ministry at different points of time and from various sources concerned about Charlie’s well-being. Despite four separate child protection responses, no child protection social worker ever laid eyes on Charlie during a protection assessment until he was removed from his mother’s care more than nine years after the first report. Even when Charlie was seen by social workers and medical and educational professionals, his needs often went unrecognized or unaddressed, and these professionals did not consistently communicate effectively about him.

The child welfare system caught snippets of Charlie — a little of this and a little of that — but failed to see him as a whole child beyond his severe special needs and too often failed to see and address the needs of his very vulnerable family.

Going back in time, Charlie wasn’t yet five years old when doctors began to voice concerns that he was being neglected. There were two lengthy hospitalizations, but despite this, they were unable to determine a medical reason for his failure to thrive, his weight loss and his inability to walk. Hospital staff also had concerns about his mom’s delay in seeking medical attention and the failure to follow through with medical appointments.

During his hospital stays, Charlie received a plethora of services and attention, and his condition actually improved. But during the periods when he was back at home, he fell off the radar of professionals, and there was no follow-up when his mother did not follow through with requested testing or appointments for her son.

Despite showing signs of significant developmental delay before he was three, he was not diagnosed with autism spectrum disorder until well after his sixth birthday. This is significant because the delay in assessment and diagnosis resulted in his family losing eligibility for $22,000 in annual under-six autism funding and the early intervention services such funds would have purchased. These services could have affected his long-term trajectory in development.

Even after his diagnosis, Charlie’s mother did not access the $6,000 in annual funding available for children with autism over the age of six. But this went unnoticed by MCFD because they don’t have a way of flagging this information. In not flagging it, there was no way of triggering a follow-up with the family to find out why — what might be going on — and how to be helpful.

The responsibility for managing autism funding and supports is complex. It falls on parents. Through our investigation, we learned that as a result of this complexity, many families simply don’t use their autism funding.

Now, when Charlie was in school, he thrived, working one-to-one with a worker, following an IEP, an individual education plan. Nevertheless, his attendance dropped off soon after he was enrolled. The school system reached out to MCFD. MCFD received calls from professionals concerned that Charlie was not attending school, but the ministry took no action, citing the fact that chronic absence from school in British Columbia is not considered a child protection concern in our child welfare legislation.

He missed more than 100 days of school over two years before his mother withdrew him completely in the fall of 2011. Neither the school nor MCFD followed up to ensure that Charlie was receiving an education at home and that he was enrolled in an appropriate educational program again until after he was removed.

[11:00 a.m.]

Between that fall of 2011 and January 2016, the family received little in the way of services and was, in effect, invisible to the system — another period when the appropriate services likely would have had a significant, positive impact on Charlie’s development.

Prior to his removal in 2016, the needs of his family similarly went unseen. I think this is a key thing. This family was struggling. The mom was living in poverty, had housing instability, had little capacity to advocate for her children or herself, and as a result, she and her family suffered.

Voluntary MCFD and community services that sporadically helped the family were terminated when contract hours ran out or when Charlie’s mother said she no longer required a service, regardless of the continuing needs of Charlie. Mom was in fact quite concerned about any oversight and quite fearful of the interventions of child welfare.

Despite the fact she was a single mother with limited resources caring for two children, including one with extreme complex needs, Charlie’s mother never once received respite services from MCFD. She was trying to cope with her own mental health and substance use issues at the same time, but her own struggles seemed to go unnoticed and unsupported. As part of this investigation, we learned that some families wait years for respite and that MCFD doesn’t track either the number of families who are waiting for respite or for how long they are waiting.

Another element is connection to Charlie’s Indigenous heritage. The protective factor that it might have represented was also unsupported. Charlie’s father is of First Nations descent, but Charlie was never identified by MCFD as First Nations, so the ministry never made an effort to connect him to his extended family, community or culture until after he was removed.

So there were many places and points in time where services and supports to Charlie and his family fell short, and many opportunities for interventions that would have made a difference. This report, though, doesn’t place blame on the individual professionals involved with Charlie’s case. That’s very important for me to emphasize: this is not about blame-finding. More accurately, it points to deficiency within the systems that can leave professionals unable to respond to the needs of children and families due to workload and caseload pressures.

Charlie’s story shows us that we need to make changes to the system, and in this report, we made a total of 11 recommendations. I’m also pleased to say that this report really reflected a new approach that we’re taking around the development of the recommendations that I alluded to earlier. They came after extensive consultation with the ministries to which they’re directed, as well as with other professionals and stakeholders.

I’ll go through them now. The most significant recommendation is that MCFD undertake a comprehensive assessment of the needs of children and youth with special needs in B.C. and the capacity of the current child and youth with special needs division of MCFD to meet those needs.

Within that, we’re suggesting to the ministry that they take a look at funding, staffing levels, workloads, program delivery wait times, and identify the necessary improvements to the system and take the actions so that children with special needs and their families can be consistently well served. Later on, we’ll talk about the breadth and scope of that.

While that comprehensive system review and overhaul is underway — and I don’t for a minute think that that’s a quick undertaking — we recommended that MCFD take immediate steps to make things better for families such as Charlie’s, including providing respite within a reasonable time to families who need it; eliminating the need for families to choose between respite and medical benefits; monitoring the use of autism funding and following up with families who are not using it. Those would be the immediate responses.

Charlie and his family would have benefited from having a case coordinator, one person responsible for helping the family navigate services — somebody that was consistently involved in the family’s life and that had a clear understanding of the family’s circumstances as well as the services available.

We think it’s important that somebody in situations like this have a clear understanding and oversight so that the various vulnerabilities of a family are being considered.

[11:05 a.m.]

Therefore, the third recommendation is that MCFD take the lead in working with the Ministries of Health and Education to develop an integrated service delivery model that enables information-sharing and offers a case coordinator option for families such as Charlie’s.

I’m also recommending that the Ministry of Health and MCFD develop a plan to ensure early identification, timely assessment, and appropriate and accessible supports for children under six with signs of developmental delay and that the Ministry of Health incrementally decrease the wait times across B.C. for completed assessments of autism and complex behavioural developmental conditions.

The report further recommends that MCFD and the Ministry of Education now work together to develop a protocol to address unexplained school absences. In addition, we’ve called on the Ministry of Education to establish mechanisms to identify when a child is not registered in an educational program, to determine how many students with special needs designations are being home-schooled and whether the school districts should be offering additional support services and guidance to these students.

We then went on to recommend that MCFD ensure that all child protection workers receive mandatory training in working with children with special needs and that children are seen by social workers during protection assessments. I should note that for many child protection workers, they don’t have any background in understanding the specific needs or even in how to assess a protection concern for a child or youth with special needs — particularly a child who is non-verbal, for example. Therefore, it’s even more important that there be an opportunity to see the child.

Finally, we’ve recommended that MCFD ensure that identification and involvement of an Indigenous child or youth’s family, community and culture be made at the first point of contact with any MCFD service and continue on an ongoing basis. While this might not have changed the trajectory for Charlie in terms of his well-being, the community definitely expressed a keen interest in having been connected and in supporting this child.

Children and youth with special needs, and their families, deserve government’s commitment and resources. CYSN can sometimes be the forgotten child of MCFD, due to the urgent nature of child protection cases. But as Charlie’s story shows us, not providing services to these children and not helping their families to cope with the incredible stress of caring for children with complex needs can result in serious consequences. As well, early intervention services for children and youth with special needs are crucial in order to maximize their developmental opportunities, and these children deserve the best opportunities we can provide.

Charlie’s story is not an isolated case. Our advocates at RCY hear daily about children and youth with special needs, and their families, struggling to find the supports and services. Our CID team receives reportables about injuries to these children — children such as Charlie — every month. Addressing these recommendations will help these families, and it’s clear that they need that help.

We’ve asked the ministries to provide us with their initial response to the report, and I’m pleased to report, as per the last one, that each has accepted the findings of the report and the intention of the recommendations, and they’re working towards comprehensive plans to fulfil the aims. In fact, we’ve got quite detailed responses from several of the ministries.

I’m also pleased to report that, three years after being discovered by police, Charlie is doing well. He’s living in a foster home that’s capable of providing the nurturing and the support that he needs. He’s thriving in many different ways. He’s back in school. He’s well nourished; he’s healthy. It speaks to the resilience of these young people. He’s described by those who know him best as affectionate, clever and observant. His father and brother are reconnecting, and culture planning is being done.

Despite the happy ending, it’s important to note that he and his family have been irrevocably impacted by the events that led to his removal. He no longer lives with his family, and his mom is no longer able to be in his life at all. My hope is that lessons can be learned from his story so that the needs of other children like him and of their families are seen and addressed before such harm occurs.

That’s the high-level overview. I’m pleased to answer any questions you might have. You should know that when we first started to take a look at the report that Jessica and the team wrote, it was almost double this size. So there is a lot of background information. That’s why we have the pros here, happy to answer any questions you have.

[11:10 a.m.]

N. Simons (Chair): Thank you very much for your presentation. I really appreciate it.

I saw another report that was written some years ago. The overall finding was that — this was a specific investigation — the child’s needs “were not adequately addressed throughout the period covered by this investigation.” It’s the same as this one. “There was no assessment of her situation as a child with special needs requiring a range of health, education and social supports for positive development” — the same as this one. The child was “not safe.” The child was left with compromised health, in an impoverished situation cared for by a mother who had severe challenges.

This was a representative report from 2011. In that time, people talked about: the caseload was 200. There needed to be coordination. Schools and ministry needed to work together. I’m just wondering. Has there been any progress?

J. Charlesworth: Well, I think in many ways, no. You’re quite right to raise previous reports and the long-term nature of the challenges. I want to emphasize that I think we are…. I am hopeful that this report will be addressed in the fullness with which it’s intended.

I’d like to acknowledge that we have representatives from the Ministry of Children and Family Development here and that we have this opportunity this afternoon to speak more specifically about children with special needs and that you’ve undertaken to do a special report of your own, research on your own. That gives me hope.

Having said that, I think that it’s important that the tyranny of the urgent, if you will, in terms of child protection, sometimes supersedes the opportunities in other areas of the ministry, in my view. I think children and youth with special needs is one of those areas that requires more focused attention.

It’s also an area that…. Again speaking to what was referenced by Joan earlier, the complexity of some of the situations that we see is very, very difficult — how best to address this unique constellation of special needs, especially when the family is really struggling.

Yes, we’re seeing the same things, and I’m hopeful. If I can hold both of those in tension, in some tension between the two, then I think we’ve got a good opportunity for continuing to raise the issues and advocating on behalf of these young people.

C. Hyman: Can I add to that? I think one of the areas where we have seen significant improvements since the report that you’ve referred to is in the area of training. The ministry, subsequent to the release of that report, did roll out comprehensive training for the CYS and staff. Our goal through this report is that that training also be provided to the child protection staff.

N. Simons (Chair): Can I just follow up? I think I see two characteristics of this particular case that cause, in my view, social workers with this particular challenge…. One is that there seemed to be a willingness on the part of the parent to be engaged. They were not resistant. I think when child protection social workers see that, it’s almost, sometimes, seen as: “Well, then it’s not critical. A parent is willing.” Maybe not able but willing. I think that’s one thing.

The other thing that I noticed was that there is a theme of…. The caregiver is afraid to let the ministry know the extent of the problem. There’s a culture involved in that. I’ve seen it, and I understand it. In your view, how do we address that issue so that we see relief when a parent sees a social worker — as opposed to fear?

J. Charlesworth: We’ve probably all got some views on that. In fact, we’ve talked about that in one of our all-staff meetings, actually.

It’s a very, very important point, and it’s a difficult point. The many parents who are feeling particularly vulnerable are afraid that in expressing their vulnerability…. That’s not just with CYSN, either. It could be around mental health. It could be around the family, the parent-teen conflict.

[11:15 a.m.]

Whatever is going on, there’s a concern that in raising their own vulnerabilities or their own need for help, that will be seen as a judgment against them as parents and, therefore, what that might entail in terms of a protection concern. I don’t know how best to deal with that, other than the ministry continuing to demonstrate its orientation to a more fulsome family-support approach and in engaging those community-based organizations that are then able to gain a little bit of separation and distance from the ministry and provide the kinds of supports that are necessary. It’s an interesting question for you to ask the ministry as well.

N. Simons (Chair): Thank you very much for that answer.

J. Isaacs: I think that chronic absence from school is really good to move forward on. It’s a good indicator, if the child is missing school, that something is going on at home that’s preventing that child from attending. I think that’s a really good flag.

Your opening comment was interesting — that this family did not receive services, when it looks like there were many services that were offered. That they just didn’t accept the services may have been a better clarification, in my view — just the way I’m reading this. Nonetheless, the mom did work to some extent, didn’t follow up and didn’t follow through.

I like this idea of respite. I’m not sure if, in this situation, the mom would’ve accepted the respite, given the fact that she was a little bit worried about having the services, oversight and supervision. Like the Chair just pointed out, it’s fear-based, as well as probably another host of issues. What would respite look like? Are we talking 24 hours? Is it a week? Where does that child go? What does respite look like?

J. Charlesworth: Well, it’s a couple of things — I’ll maybe turn to you in a few moments — in terms of the services that were offered and not accessed and when services weren’t offered, because there were whole chunks of time in which services weren’t made available.

In terms of the respite piece, I think there are many variations on respite. For example, there are respite arrangements in which there might be a couple of hours a day or even half a day in the week all the way to respite homes that are available in some communities where there’s an ongoing relationship that that family and that child have with respite caregivers. That’s a familiar place, and they might go there for one weekend every month, for example, in order for the family to get a deeper break and be able to focus on the other children in the family home. It depends very much on the characteristics of the family and what is going to be able to support that family’s well-being and that individual child’s well-being.

Of course, the interesting thing, if you’re talking about a child with autism, is that oftentimes having consistency is extremely important. Having regular routines and rhythms or familiarity of caregivers becomes extremely important as well. That’s another consideration in the development of respite as well — that there is some regularity and consistency that everybody can count on.

That having been said, I’m wondering if there’s something that you want to…. Are there any more questions on the respite piece? Then I’m going to….

J. Randhawa: I can add to that in terms of Charlie’s case. In this particular case, the mom did ask for respite, I think, on two occasions. What was particularly important to her, the type of respite that she was looking for, was in-home respite or someone to come to an environment that was familiar to Charlie. With his special needs, going to another home or somewhere else like a respite home would cause him to be a little bit more aggravated — or whatever the word you want to use is — and the mother was looking for someone to come into the home.

L. Throness: Just a few questions. Throughout the report, it talked about a lack of adherence to standards by MCFD staff. I’m just wondering. In a home visit, are MCFD staff required to actually look at the child that they’re visiting?

J. Charlesworth: Do you want to speak specifically to the policy?

[11:20 a.m.]

J. Randhawa: In my previous life, I was a child protection worker. This was a huge thing that stood out to us too. In all of the child protection assessments or investigations, Charlie was never seen by a child protection worker. That is a fundamental piece. When you’re assessing a child’s safety, you must see that child. It’s in policy.

L. Throness: It is?

J. Randhawa: The child must be seen. If, for some reason, a child cannot be seen — there are some circumstances — you must get a supervisor’s approval, and it’s to be documented. We didn’t see that in any of these cases.

L. Throness: The case coordinator idea, I think, is a really good idea. Has the ministry committed to that?

J. Charlesworth: The ministry has committed in principle to the idea. It’s not just the Ministry of Children and Family Development, but they have committed in principle to the idea of some sort of navigation or case coordination.

L. Throness: Okay. MCFD conducted its own internal review of this case before you began your investigation. That was done in January 2017, two years ago. So it’s known about this for a long time. Can you point to any concrete change at MCFD as a result of this case?

J. Randhawa: MCFD did conduct its own internal review. The injury happened in January 2016. They have their own quality assurance mechanisms when an injury or death happens to review.

They did have two recommendations that came out of that. One was to child protection and going back to the team where this incident took place and going over the child protection standards of seeing the child. That was one of them.

Then the other one was in regards to child protection and CYSN — when you have files open with both streams of the ministry — and how they communicate with each other to more effectively support the family. What did happen, particularly in the last file before Charlie’s removal, was that the child protection worker and the CYSN social worker didn’t communicate as per standards.

Something that did come out of the report that Nick had mentioned, Isolated and Invisible, was a practice guideline for child protection social workers and CYSN social workers to communicate when they’re involved with the same family.

What we found with the ministry’s case review, and you can speak more to it, was that it was very surface level. It didn’t address the more deep-rooted issues.

L. Throness: Okay. Just one more question, if I could.

N. Simons (Chair): Okay, Laurie, if you can keep it brief.

L. Throness: I will.

I was alarmed to hear that this is not an isolated issue. This is obviously a uniquely tragic story, but you indicated that this happens much more, or more. Can you quantify in any way how often this happens?

J. Charlesworth: The short answer is no. We can’t quantify because, of course, the whole idea of Alone and Afraid or invisible means that we don’t know whether there are other children out there.

Having said that, through other mechanisms — through advocacy and whatnot — we certainly know that there are children and their families who are feeling that they are not getting the kinds of services that they need and that they’re hanging on by their fingernails in many cases.

Finally, I just wanted to go back to the respite piece. One of the challenges is that there’s a tremendous amount of responsibility placed on the parents to navigate the system and to find the resources that are necessary. So imagine you’re housing insecure, you’re living in poverty, you are isolated from family and community, you’ve got a child that has very unusual behaviours that make it feel very uncomfortable when you’re out in the community, and you don’t have a phone — all those kinds of things.

The wherewithal that’s required to find the services and supports and get your child to the services and supports or locate and pay up front for a respite care giver is asking a heck of a lot. So that makes it very difficult as well. That’s why you see parents kind of just being disconnected from the system, because the system is not necessarily reaching out to them.

We can’t quantify, but there are some interesting dynamics around that.

[11:25 a.m.]

C. Hyman: I can add one number in terms of critical injury and death, reportable circumstances that our office receives. In the last fiscal year, we received 134 critical injury and death reports for children and youth who received special needs services.

N. Simons (Chair): Thank you for that.

R. Leonard: Lots of questions. It is just a very heartbreaking story, and I’m glad to hear it’s having a more positive ending at this point.

I looked through it a few times, and maybe I’m missing it. At what point was Charlie actually assessed and given some kind of designation that said that he was special needs so that he was eligible for services? Also, along those same lines, is the recognition of a parent who may be resistant to having their child labelled, may be ignorant of the resources that would be available, but also dealing with the shame and stigma of having a child who has special needs.

One other thing was the issue around the precarious housing, and the whole idea of being able to track children in terms of schooling. It’s fine if they’re in the same place, and you can find out why they haven’t come to school. But if they’ve moved, how do you…? I understand that protection of privacy. But at the same time, the rights of the child…. How do we resolve the two?

J. Charlesworth: A couple of things. Jessica has the timeline out, so I’ll refer to her in a few moments in terms of the designation of special needs and autism. I think it’s going to be an important discussion that we have around designations or diagnoses because that actually ties back into the shame piece as well or the concerns about diagnoses.

We’re going to talk a little bit more from our perspective around the ways in which assessments get done and how. But in terms of Charlie’s specific case, do you want to speak to the timeline?

J. Randhawa: Sure. If we look at the timeline that’s on page 40, it shows…. In January 2008, that was the first time Charlie had presented to a medical clinic. It was actually due to an infection in his mouth. The doctor at the walk-in clinic had noticed some significant delays in his speech — it was a pretty significant concern — and made an immediate referral for a developmental assessment. So that was in January 2008.

He was later hospitalized, as well, the following month. Once again, that infection got worse. So he was brought into the hospital. January 2008 was when the referral was made for an autism assessment. You’ll see in the following year that he was again hospitalized due to concerns around neglect and failure to thrive. It was at that time he had a prolonged hospitalization at Sunny Hill. He was given that diagnosis of autism, although in the year before 2008, that’s when his CYSN file opened, because he was given medical supplies. So the family was given other sorts of supports in terms of diapers and supplements to help with feeding in 2008. But his actual autism diagnosis was in the summer of 2009.

J. Charlesworth: Jenn has a comment, and then I will address the one on education, because we’ve got some speci­fic information there.

J. Morgan: I just wanted to point something out that you picked up on that I think is a real significant point for a lot of families and children accessing these services. It is: what is assessment? What is diagnosis? What programs require a diagnostic assessment, such as an autism assessment, that’s performed by, say, a psychologist or a pediatrician that ends up with a label like autism? What are those programs that require a different kind of assessment, which we could call a functional assessment?

Charlie embodied a case that we see all too often, where he had very significant medical concerns. He had very significant developmental delay and behavioural challenges, so his family was required to navigate both the health and the MCFD system in order to access supports and the assessment needed for those supports.

[11:30 a.m.]

For example, for his chronic health conditions, the Provincial Health Services would order a nursing support services assessment that then gets him into MCFD services. Similarly, the autism assessment is carried out by the Ministry of Health to get into MCFD services. They’re all very piecemeal.

Again, when we talk about this case, we really talk about seeing this child, and other children like Charlie with very complex cases, as a whole, embedded within their family and then that family embedded in the community. So I think your point is very well taken, and it’s very broad. I think we’re going to talk about it later.

N. Simons (Chair): If I may, we’re running short on time for this discussion. If there are parts of this that can be discussed when we talk about special needs, that would be great. And we can refer back, of course, obviously. But did you want to actually just continue?

J. Charlesworth: Just very quickly around education. It’s a very good point, but in speaking with the Deputy Minister of Education, he said they actually have capacity that they can build. They’ve got an information management system that will allow them to track, so it’s a matter of us working with them to understand that a little bit better. So it’s not without…. There is some opportunity.

R. Singh: Thank you again for this report. I’m glad that this worked out well in the end, but it’s a really sad story.

One thing that I have noticed in my experience with the constituents who come to our office is that a lot of times I think it requires, as you have mentioned, a lot of advocacy on behalf of the parents to navigate these services. That’s where I hope this report — that MCFD takes notice of that, because it’s very hard, as you said, when there are complexities in the household, how to navigate the system, especially in the socially cultural sense also. There’s a resistance.

I know that in my community, there would be resistance, first of all, to get the child diagnosed but then, once their diagnosis has happened, even then, to seek out the services. But even in the school system, the more aggressive the parent is, the more services you get. Otherwise, they just fall through the cracks again. This is something that I think is very important to bring out. We should be more proactive — the ministries, both Education as well as MCFD — with the parents to provide them with the resources rather than leaving it up to them to seek out those resources. I think that is something good that can come out of this report.

J. Charlesworth: Just to comment on that, I think one of the other things that’s so important is to think about what those normative interventions are, those places where young people can get the support they need — schools being so critical, because that’s a place in which other children are there — instead of it being attached to the stigma or the shame or those kinds of things that often make it more difficult for a family to access. That becomes important too — taking a look at where those places are within a community that a child could be included in a good way.

R. Glumac: Thank you for the report again. I have a lot of questions, but I’ll try to keep it short. Could you, just for the record, summarize in what circumstances a child needs to be put in protection under section 13 of the Child, Family and Community Service Act — to start with that?

N. Simons (Chair): Essentially, under the act, it’s if the child is in need of protection, and that’s determined by a social worker.

J. Charlesworth: It would be things like abuse and neglect — there’s a fulsome description of each of those — but not, in this case, educational neglect. That’s not included.

R. Glumac: No. I understand.

In reviewing the timeline of what’s happened here, do you have an opinion on when that should have happened? Is there a specific point in this timeline of circumstances that you think the child should have been put in protection?

J. Charlesworth: There are different ways of answering that, but here’s my take on it in a general sense for children like this. Then maybe I’ll turn to you to see if there are points at which….

[11:35 a.m.]

Fundamentally, I question whether the child would have needed to be brought into protection had the timely assessment, supports and wraparound been provided to this family, particularly given the risk factors for this mom and her mental health and well-being. There were certainly many points of intervention. Perhaps a more thorough intervention at those times might have stabilized the family and enabled them to continue to provide care.

That’s one consideration. It doesn’t necessarily automatically mean that there needs to be a protection response, although that was the case in this situation. But I wonder, if we were to reverse and go back in time, if this family — including the father and the brother, who might have had some capacity to assist here too — had been given the supports, whether a protection intervention would have been necessary. That’s in a general sense. I don’t know if Jessica, Carly or Jenn want to add anything.

J. Randhawa: Just to clarify, by coming into protection, you mean coming into care? Okay.

When a child is found in need of protection, there are different levels of intervention that can be done with the family, so it doesn’t automatically mean that the child comes into foster care. It means that you are involved with a social worker who’s putting in a whole bunch of services for the family to really address that issue so the child doesn’t need to come into care. It’s, perhaps, holding family meetings to look for alternative options, for other family members who can care for that child.

What we saw in this case, pretty significantly, was that no other family members were spoken to — not the father, the brother, who was significantly older, or grandmother. There were a lot of other family members who could have been there to support this mother in an alternative way, perhaps care for Charlie for a while.

I think it was very difficult for us to really know what was happening in the home, particularly after Charlie was withdrawn from school. I don’t think we could quite say when the mother was no longer able to care for him. What we did find is that her substance use became a significant problem in the summer of 2014, when she started, from what we could find, using more, harder substances.

R. Glumac: Just a last comment on that. The one part that really struck me was when he was admitted to the hospital, his weight had dropped from 38½ pounds down to 32, being in the 3rd percentile for this age. That seems to me like a very dire situation. I know that it was given a lot of help after that, but the fact that he was allowed to get down to that weight raises a lot of alarm bells for me. Do you have any comment?

J. Charlesworth: That really speaks to the “not being seen.” Absolutely.

N. Simons (Chair): Good comment, Rick.

T. Wat: Again, thank you to your office, which has done such a comprehensive report. I think this is an unfortunate case. But as long as we learn from it, I think we can move forward.

I only want to ask one simple question. It’s about the closure of this file, because in your report, you do say that this is an example of a closure of a child protection assessment without sufficient information. A lot of staff express their concern that they feel pressure to close the file. I know we talked about it earlier on.

I just want to know, given this lesson, has the ministry set up a clear guideline on when they can close a file, to prevent this from happening again?

J. Charlesworth: Good question. In terms of whether the ministry has a clear guideline, I think you’d have to ask the ministry pertaining to that.

J. Randhawa: What I can speak to and what I found in my past experience with the ministry and also during this investigation is that that does exist. There is a very clear guideline of what needs to happen in order for a file to be closed. For example, the child needs to be seen; both parents should be interviewed, unless one is completely not involved; other siblings; the home needs to be seen. So there are very clear guidelines. What we found in this case was that they just were not adhered to.

T. Wat: So there were clear guidelines when this case happened?

J. Randhawa: Oh, yes.

T. Wat: So how are we going to prevent this from happening again? How is the office going to make sure that the ministry is going to enforce it without, you know…?

[11:40 a.m.]

J. Randhawa: One of the recommendations we do have is that the ministry will ensure that children are seen during child protection investigations. That’s one of the fundamental policy requirements. I think, through that…. I mean, I can’t speak for the ministry, but I think they’ve also read this report and accepted the recommendations. I think there are probably steps that they will be taking.

C. Hyman: And we will continue to monitor the ministry’s implementation of the report’s recommendations.

J. Charlesworth: You do raise an important point, about there having been significant pressure to bring file numbers down — and, therefore, file closures. This was actually one of the interesting things that was eliminated through this report.

The minister, in her response immediately following the report, said that they would be working earnestly to ensure that the policies and guidelines with respect to assessments and eyes on the child, etc., would be upheld. So we’ll be monitoring that.

N. Simons (Chair): Thank you very much for your presentation and for answering our questions. It’s very much appreciated. Thank you, committee members.

J. Isaacs: I know the Chair is anxious to wrap this up, so I will be quick. This is just about being seen.

School is really important. It’s key because the child is seen every day at school. The child is seen every day by a teacher, by other parents, by students. So there is a little a bit of responsibility and accountability, from other people that are witnessing what’s going on, to come forward and help that family and help that child.

I’m wondering if, in your work, you would consider — perhaps you’re doing this now — presenting on professional days or to DPACs to talk about some of the issues that you’re seeing in the ministry and how, as a village, the school can actually play a very important role.

I know with DPAC parents, if they were able to understand, maybe, spotting some of the issues and had access to navigate some of the system, there are probably a lot of DPAC members there that would help that mother. It’d be more of a conversation as opposed to a confrontation.

Then, with the support of the teachers and the counsellor and so on, it could be a whole group working to advocate for that family, because that is where that child is seen every day. If that child is missing 100 days of school — good heavens — who’s not reporting that? Then to have that weight loss is just not acceptable at all.

Anyway, I’m just thinking it might be a good approach. It would just be another approach to help a family.

J. Charlesworth: Just to comment on that, I really appreciate it. I’ve had a policy, by the way, of saying yes to any invitation anywhere in the province to try and get the word out. In fact, several weeks ago, I was presenting to the First Call coalition, and there was a representative from the DPACs. They’d asked whether I would come and present to the annual gathering, etc., and I said: “Of course.”

Those kinds of opportunities are critically important — you’re absolutely right — as is a presentation to the principals and the vice-principals, which I think is in the works as well, as an opportunity to speak about the whole community.

I’d like to note that one of the things that’s an important pattern for us is to recognize that it’s not just MCFD. In this case, we’ve got to take a look at Education, Health, the health authorities and, in the previous report, Mental Health and Addictions. The complexity of these children’s needs is such that we actually have to have the whole community.

I completely agree. It remains an important conversation about how it is that school absences are tracked and managed and where they go with that in order to understand if this is a warning sign. I couldn’t agree more.

Did you want to add anything?

C. Hyman: I would just add that the team is working on developing a report dissemination plan. It’s an excellent suggestion, and we’ll take it into consideration. Thank you.

J. Randhawa: We do a lot of work in these investigations, and we want it go past just the report release. That’s something that we definitely want to do.

J. Charlesworth: Just as a little aside, as well, I’ve offered to the ministry — any of the ministries — to do webinars following any of our report releases to explain a little bit more substantively to the front-line workers why we’ve done what we’ve done and what our intention is, as well, to try and demystify and de-escalate the fear that people sometimes have about our office.

That’s important for our advocates, too, so that they can continue to work there. Those are a few little things, but I appreciate the suggestion around the DPACs.

N. Simons (Chair): Let’s just take two minutes for recess.

The committee recessed from 11:45 a.m. to 11:48 a.m.

[N. Simons in the chair.]

N. Simons (Chair): We now have an opportunity to hear from the Ministry of Children and Family Development, from Christine Massey and Emily Horton, on the issue around children and youth with special needs.

Welcome to the committee. Thank you for being here.

Briefings on Children and Youth
with Special Needs

MINISTRY OF CHILDREN
AND FAMILY DEVELOPMENT

C. Massey: Good morning. Thank you for having us. I’m Christine Massey. I’m an assistant deputy minister with the Ministry of Children and Families. I have responsibility for early-years and inclusion programs. I’m here with my colleague, Emily Horton, who leads this policy program area in the ministry.

Before we get too far along, I want to acknowledge that we’re on the unceded territory of the Musqueam, Squamish and Tsleil-Waututh First Nations. I’m very pleased to be a visitor on their territories here today.

I understand we’ve been invited to help the committee kick off its special project on CYSN services. However, I would be remiss if I didn’t acknowledge the very powerful presentation we’ve just heard, from the representative, on Charlie’s story. As the representative noted, the minister and the ministry have accepted the intent of the recommendations.

What happens next, when we have a report like that from the representative, is that the ministry works on an action plan about how we will implement the recommendations, including timelines. That’s part of the accountability process back to the representative — who, as they mention, monitors our implementation of their recommendations. That work is underway. If there’s an interest from the committee to hear from the ministry on that, I can certainly ask that we come back to present on that action plan specifically.

Today what we plan to present is information on our child and youth special needs programs — specifically, the programs that are offered on a voluntary basis to the community.

[11:50 a.m.]

I won’t be speaking about services for kids with special needs who are in the care of the ministry. Again, if that’s of interest to the committee, we can certainly come back and provide more information on that.

What I’m hoping that the committee members will come away with today is a good understanding of the suite of programs that we have, some of the challenges we face — some of which we just heard about — and what we’re planning to do next in this portfolio.

With that, I will hand it over to my colleague Emily.

E. Horton: Thank you for the introduction, Christine, and for recognizing the traditional territory.

My portion of the presentation today will be with the intention to provide a high-level overview of the supports and programs we have for children and youth with special needs. The intention is that that foundational knowledge will give you a good understanding of the current state but also frame some important context for where government is going in terms of improving services available for children and youth with special needs and moving from a patchwork of programs to a core set of services to children, based on their needs.

At a high level, we can say that MCFD’s programs and services exist to achieve four key, overarching intended outcomes.

Those are, first, to improve or maximize an individual’s developmental outcomes and quality of life. Early supports can provide a much-needed boost in, for example, speech-language development. The skills acquired through that kind of intervention can have profoundly positive impacts on a child’s lifespan and developmental trajectory.

The second high-level objective is really to support family preservation and wellness. As you might imagine or have experienced, parenting is a challenging experience with a typically developing child. It can be exponentially more challenging for a child who has extra support needs. We know that there can be a correlation between raising a child with special needs and paternal mental health, spousal relationships and the actual act of parenting itself. Ensuring that families have the supports that they need to parent a child with special needs is critically important to keeping families together and keeping families well.

For those of you with more of an economist lens, you can quickly determine that supporting a child with special needs in early childhood development and through adulthood can have significant long-term costs to government and taxpayers. These can come in the form of health costs or social supports. Supporting children such as these to thrive in early development and through the school system can pay dividends not only for the individual, in terms of improved employment income or earnings, but also for society as a whole, in terms of things like cost avoidance to our social supports or health system.

Lastly, our programs at MCFD exist to support community inclusion, ensuring the active and full participation of people with special needs in community. These supports provide opportunities to participate in programs such as child care.

C. Massey: I’ll just pause for a moment. I think you all have a copy of the presentation. Maybe, Emily, just note the slide numbers you’re on as you move along.

E. Horton: Absolutely. I’m on slide 3 now.

As you might imagine, MCFD doesn’t operate in isolation. We work closely with the Ministries of Health and Education, as well as numerous community agencies, to deliver the programs. Together, at a high level, we strive to deliver programs that are inclusive, responsive, accessible and culturally respectful.

I thought it might be worth noting the role of the other ministries to provide context, to understand what MCFD’s role is versus Health or Education.

The Ministry of Health, in this area, is the sole provider of formal diagnostic assessments for children — for example, an assessment of autism spectrum disorder or a confirmed developmental disability diagnosis.

[11:55 a.m.]

While MCFD programs can provide assessments for children’s development, it’s not for the purposes of this formal diagnosis. A child may come into an MCFD program — for example, a two-year-old that hasn’t taken their first steps — and may be assessed by the program to have a gross motor developmental delay. The MCFD assessment is to help frame the intervention and the program delivery for that child, but the MCFD program does not go further to provide a formal diagnosis to that child.

Then, similarly, the Ministry of Education provides supports to children with special needs within the school day. This is often in the form of educational assistance or behavioural supports. They do not provide school-aged interventions or therapies for children outside of school hours, and they do not provide the family support programs. Their suite of supports really focuses on inclusion of children with special needs within the learning environment that’s provided by education.

So those are the roles of the ministries.

Moving to slide 4, I thought it might be helpful to talk just really at a high level about who these children with special needs are. Together, the Ministries of Education and Health and MCFD attempted to create a definition of a child or youth with special needs. That is a child who requires a significant additional educational or medical and health or social and environmental support beyond children in general to enhance or improve health, development, learning or quality of life and participation.

As you can likely imagine, there’s as much diversity within the population of children with special needs as there is within the general population, and I think we often forget about that kind of diversity. So it’s really fundamental to acknowledge that the definition MCFD uses in the programs we deliver really encompasses such a broad range of children with diverse needs, from those with sort of mild developmental needs — for example, those requiring time-limited early intervention like a speech-language therapy — to those with lifelong, significant disabilities, such as a severe intellectual disability.

There is often a misconception in the public. That can be that CYSN programs are really…. When we’re talking about them, we’re talking about children with the most significant needs. But in fact, when you look at the distribution of children, it places the bulk of children really at the other end of the continuum. The bulk of children in our CYSN programs are those with mild to moderate needs. I just wanted to provide that piece of clarity.

Slide 5 provides some context regarding the pathways to access programs. I thought this might be some important context because they really are like eligibility gateways. We have three umbrella-type programs. The first are programs that don’t require any kind of formal diagnosis, such as the programs I spoke about — early intervention programs like that speech-language or occupational therapy. They’re often for children under the age of six.

These programs can provide time-limited supports and can be accessed through family referral, community referral — for example, a child care operator — or more formal pathways like a public health nurse or a GP, a doctor.

Other programs require a formal medical or psychological assessment and diagnosis — for example, our programs and supports for children with autism spectrum disorder. It would be those programs where the Ministry of Health would be providing the formal diagnosis and assessment.

The other sort of category of programs are programs that are accessed through a functional assessment. For example, a professional has based your eligibility on dependency in daily living categories like eating or toileting or dressing. As Jenn from the representative’s office describes, functional assessments are not like a formal diagnosis.

[12:00 p.m.]

It’s not when a formal diagnosis is being sought. It is really about a professional trying to understand how that child or youth is functioning with daily needs.

Overall, we have approximately 30,000 children in British Columbia between the ages of zero and 18 who are annually accessing our MCFD CYSN services.

On slide 6…. At a high level, MCFD’s investment across those 30,000 children is approximately $350 million annually in programs and services. These programs really fall into three high-level categories: foundational programs, specialized provincial services and family support programs.

The actual specific programs that are delivered under these umbrellas I can describe for you, but I wanted to bring your attention to the fact that these can be delivered in any number of ways. They can be delivered through contracted community agencies, such as a child development centre; they can be delivered through the support of an MCFD-employed child and youth with special needs social worker; or they can be directly funded to families, as in the case with the autism funding program. In these direct-funded situations, the family acts almost as a case manager, procuring the interventions that meet the individual needs of their children.

I understand that one of the objectives was to provide sort of the overview of the program, so I’ll speak briefly about those three umbrellas.

On slide 7, foundational programs are the first sort of umbrella. They exist to provide direct support and intervention for children with or at risk of a developmental delay.

Again, children that participate in foundational programs can be participating with time-limited interventions. In other cases, these children may be waiting for a formal diagnosis and may, in fact, receive a formal diagnosis for something such as autism, and they may go on to have many years of support and many years of programming. Other children will transition out of foundational programs once their intervention needs are met.

These programs have some key characteristics. No diag­nosis is required to access these programs. They can be directly accessed by families through direct referral. They do not involve MCFD social workers, and they are exclusively delivered by community contracted agencies, such as those child development centres. In B.C. right now we have about 20,000 children participating in foundational programs and an overall investment of approximately $125 million annually.

Specific programs you may have heard of include the early intervention program, which provides speech-language ther­apy, occupational therapy and physical therapy; the infant development program; or the supported child development program, which provides funding that allows for the inclusion of children with special needs in our child care settings.

In 2017-18, MCFD provided an additional $8 million to the foundational programs to help offset some existing wait-lists for services as well as to introduce a new stream of early intervention around behavioural consultative services. In 2018-19, MCFD increased the supported child development budget by $10 million as part of its commitment to universal child care and the inclusion of children with special needs in child care settings.

One of the things we know about foundational programs is that they’re fundamentally important, just in terms of intervening early with a child’s development and having the greatest impact on their developmental trajectory. But we also know that families experience challenges in terms of wait times for service or the level of service that they are receiving.

On the next slide…. Specialized provincial services are really about providing services to very specific populations. Those include children with autism spectrum disorder, those who are deaf or hard of hearing, those with acquired brain injuries and children who are deemed functionally dependent, beyond the general population of children who are, obviously, dependent as well. These programs are accessed only through a formal diagnosis or a functional assessment and with the assistance of a social worker.

[12:05 p.m.]

To just highlight a couple of the very specific programs, as they were mentioned in the representative’s report, the At Home medical benefits program provides support to about 3,600 children annually, with a budget of $25.6 million. This program supports functionally dependent children to access medical supplies and benefits that support with their medical needs.

The autism funding program supports about 15,700 children each year, with a budget of just under $90 million. That is a directly funded program to the family. With a child with an autism diagnosis under the age of six, a family can receive $22,000 a year to then go and purchase services in community that meet the needs of their child. That funding drops to $6,000 per year for children between the ages of six to 18.

The provincial deaf and hard-of-hearing services support about 1,000 children through a residential program to meet the unique needs of the deaf and hard-of-hearing population.

The community brain injury program provides supports for children and youth with acquired brain injuries.

On the next slide, our family support programs. These programs exist to children and families in any of the following categories: a documented developmental intellectual disability — children with an IQ under 70, as formally diag­nosed using the diagnostic skills manual; children and their families, for children who have a formal diagnosis of autism spectrum disorder; and children who have received a functional assessment and are deemed functionally dependent in three of four categories, or four of four, for the At Home program. These specific programs are often coordinated with the assistance of a CYSN social worker who’s an employee of MCFD.

I’m just going to talk about a couple of really specific programs, given the connection to the representative’s reports. Respite services provide up to $2,800 a year to families to purchase a much-needed interval of rest from the responsibility of parenting a child with special needs. We hear from both the RCY and families in B.C. that respite can be a really key support to support family wellness, parental mental health, but we do have wait-lists for this service. We have about 4,200 families participating now in respite services, but we are aware of families that are waiting for this service.

We also have various in-home supports, like the homemaker program, and other supports that are for specialized populations like those with suspected or diagnosed fetal alcohol spectrum disorder.

That is the overview of the suite of programs as they exist in the current state. I will just pass this over to Christine to chat about challenges.

C. Massey: It won’t surprise you, from some of the challenges that I’m going to speak with…. First off, we have high in-demand services, and parents are experiencing wait-lists for these services. This, of course, has real implications for children and their families, particularly with young children, where you want to intervene early because the research suggests that the earlier you intervene, the more successful you may be at mitigating the issues down the road.

We also have, as you’ve just seen from Emily’s explanation, differing access and eligibility policies based on what the family support need diagnosis was, and it’s becoming increasingly difficult to explain to parents why those differences exist and why they may get one type of service, compared with their child, who seems to have just as urgent needs as another parent with a child with different needs. This is an area where we really want to dig into the research to see what the latest research tells us about eligibility requirements.

[12:10 p.m.]

We’ve also heard around workload issues for CYSN social workers in the ministry. It’s certainly clear that the CYSN social worker role is broad. It includes both front-line social work as well as a range of administrative responsibilities. We do have underway in the ministry a workload analysis of CYSN social work to see how we can improve some of the conditions for CYSN social workers, much as we did with child protection staff a couple of years ago.

We’re also seeing a change in population of children and youth with special needs. We are certainly seeing increasing numbers. This is most evident in the number of children diagnosed with autism spectrum disorder; the prevalence increases every year. Also, FASD numbers are going up. There’s a debate about whether this is overdiagnosis or a truly increasing prevalence and better identification. Some of that debate, perhaps, we’ll leave for another time. But the indications are that it’s just better identification, both with parents coming forward and with our diagnostic tools.

We’re also seeing more complex children living in community, where they require MCFD services. In part, this is a good-news story where hospitals, because of advances in medical technology, are able to discharge children with more complex needs to live at home. That means that that parent may need more support at home to support that child.

Another key shift that we’re seeing increasingly at the front line is the co-morbidity of mental health with other disorders, particularly autism. I think this is generally recognized as an area that’s undersupported. We’re still coming to terms with how to support children with multiple diagnoses and how to coordinate those services which are currently provided by different professionals, depending on the needs of the child. So that’s a key emerging issue we’re seeing in the community.

Moving on to slide 11, what is the ministry planning to do next? We certainly agree with the representative that we need to update our programs and respond to the issues that parents are telling us, that we’re seeing in the evidence and that the representative has identified.

The reality is that some of our programs were established over 30 years ago. Some of them were simply transferred to us from Community Living B.C. when we assumed responsibility for some of their programs.

We’re embarking on a piece of work that we call a service framework. In plain language, what I think of as a service framework is that the ministry is clearly able to articulate to parents, to its front-line staff and to our service partners, like the Ministry of Health, what it is that you can expect to get from the Ministry of Children and Families when you come and ask for service — what services are available depending on the community you’re in, rural or urban, and what you might get.

It’s our obligation to be much clearer about that. We are starting by identifying the services that children and families need and are asking for. We’ll clarify the pathways to eligibility. This is where we’ll start to dig into what the research says around whether there are any changes required to the different eligibility gateways to some of our programs.

We also need to do a better job of linking our services with those from other ministries — we heard in the representative’s report how the mother had to cobble together services from different ministries — and aligning with our current research. This kind of work would then guide the ministry’s budget allocations for services for kids with special needs.

Where we’re starting with that is by doing a comprehensive inventory and research. It’ll include journey mapping with families, so they can tell us what it looks like to them, and work with internal and external ministry partners. This was actually very similar to one of the recommendations in the representative’s report — to start at this place. We’re also hoping the representative will participate with us in some of this work.

At this point, this concludes our formal comments. I’m happy to open it up for questions.

M. Stilwell (Deputy Chair): I waited to ask some questions from the previous presentation from the RCY, so some of the questions might integrate a little bit. But I thought maybe they were better responded to by MCFD.

[12:15 p.m.]

I think most people know that I am a person who has utilized MCFD services for the better of 15 years with a child who’s 17 and who’s aging out at this point. I go back to when my son was first diagnosed.

A Voice: How old was he?

M. Stilwell (Deputy Chair): Three.

You know, when I was thinking about how I could do this, I thought I could do this, but….

Some Voices: You can.

M. Stilwell (Deputy Chair): Obviously, for any parent, it is traumatizing in many ways. You put your child through multiple tests, and you’re told by many doctors and nurses: “You need to do this. You need to go here, and you have to have this assessment in order to get what you need to be served by government in the best interests of your child.”

I’ll never forget when he actually got the autism diagnosis. We had gone through the assessment. It’s a long day for a child. The report came back, and we went in. What we were given was a binder of local services with checklists of: “Call this person. Do this. This is what he needs.” We were sent home with a very descriptive diagnosis of all his challenges and what our future was going to look like.

And that was it. There was no follow-up. Nobody ever called to see if I had called anybody, if I had followed up and followed through on any of the services that were technically available.

I think…. I’d like to think I’m a strong individual and I can do the research and I can take care of things and I can plan and I can prepare. I think I’ve done very well in the last 15 years since that diagnosis.

What challenges me are those individuals that don’t have the resources that I have, that don’t have the family support and the friends that surround you and pick you up and lift you up. So I just want MCFD to be very aware of that and that maybe there’s an opportunity for support or for social workers, even when you make that first call. If a parent says, “No, I’m okay,” it is because of what we have talked about today — that fear of what comes with accepting the help, the judgment that comes when somebody is coming into your home and seeing what exactly it is you are or are not doing with your child.

We need to do better in following up and being proactive. I know that social workers are stretched. Even if we had somebody who was assigned specifically to make phone calls and just check in with people. “Have you made the phone call? Do you need support to make that connection to the community? Have you gone to the appointment?” That’s where the gap is. That’s where you fall through.

Once you get so overwhelmed with just trying to maintain what your daily life looks like and you’re not sleeping and you’re not getting the rest that you need because you haven’t accessed the respite that may or may not be available to you…. I just think we need to be very aware of that.

Jennifer mentioned that many people aren’t accessing the funding. I’ve accessed the funding. I will continue as long as I can because I know that it is helping my son. Do we actually have the stats? Have you figured out a way to understand who is and isn’t accessing their funding? The challenge with that funding, too, is that you don’t know what to spend the money on, because as a parent, you’ve been given this diagnosis and no training or understanding of what that means and what is actually in the best interests of your child.

You say that the parent knows best what their child needs. Well, when you’re so overwhelmed, you don’t know what you need. You don’t know if it’s speech therapy or occupational therapy or…. What is it? “Should I put him in swim classes to work on coordination? Is it more important for him to be able to hold a pen, or does he need to learn how to use a computer? What does his future look like? Who am I trusting to tell me what that should be?”

[12:20 p.m.]

Not only that. Through MCFD, when you access that funding, I think there’s one major gap. It’s that one parent is assigned to oversee that funding.

I’m sorry, but we live in a world of divorce and compli­cated partnerships when it comes to raising these children. Many times the relationships break down because of the child and how challenging it is. Then you have two parents living in different homes, with one parent being shut out of the decision-making of how that money should be spent.

I have a constituent who has a son with autism. The mother is the woman on the file who won’t send the child for supports, and the father hasn’t been able to access that money. He’s willing to take the child to OT/PT, physio, speech, whatever, but can’t access it. There has to be a way for us to figure out how parents who don’t cope well can still have the interests of the child at heart.

I’ve said it before at other meetings that we’ve had. We need to do a better job of the family support and the training. Train the trainer. Train the parent, because when you are so overwhelmed and so challenged, how in the world do you even know what the next step is, what the best step is?

We all want what’s best for our child, and we want to give them the best possible outcome and let them reach their full potential. But we don’t want to ever regret that we should have or could have or would have, if we had known. And if we don’t know, we can’t, so what are we doing for the parents and the family?

The family support that you talk about is not good enough. I haven’t received it, and I’m one of those people who advocates for it. I’ve never gone to an autism support group for families — ever. So that’s it.

N. Simons (Chair): Well….

M. Stilwell (Deputy Chair): It’s just a small bucket list of things.

N. Simons (Chair): Thank you, Michelle. Thank you for making the issue even more immediate and personal. I think that’s really helpful for us as a committee, and I appreciate you sharing, by the way.

I know these are issues that the ministry has heard and that the representative has heard about, and this is why I’m particularly pleased that we’re pursuing this a little bit more. Sometimes we’re alone and invisible. Those are areas that we need to just raise up. So you’re doing your part, and we’ll do our part.

I don’t know if the ministry or Christine or Emily would like to respond.

C. Massey: I just wanted to thank you for sharing that. It struck me that even the experience of diagnosis, which is many years ago for you now — how real that still is. It’s certainly what we’ve heard from parents. That the initial diagnosis….

There are also other key transition points, say, into school or as your child is approaching aging out of child services. These are all key points where parents need much more support than what we’re offering, particularly the autism funding model. It’s an individualized funding model, but we haven’t built around some of those supports that you’re describing that parents still need.

I liken it to becoming a contractor on your home renovation. You have to become an expert in the trades and figure out how to put them together in the right sequence to get the best result that will meet building codes. That’s a hard job. Thank you.

Also, we’ll be following up on how we track who uses the funding. That’s a specific recommendation from the representative’s report. I’ll follow up on the issue of co-parenting.

R. Leonard: Just to follow up on the points that Michelle was raising, the whole issue of family breakdown really, I think, highlights the need for the early intervention, because maybe we can help families stay together. You did mention that early on, so I think that’s kind of a big priority.

The question I have is around age and funding. I know that after age six, there are big changes in families’ lives. I would like to know, maybe, why and what we can do to ease the burden that happens for families when their child turns six and no longer has access to programs that the families have come to rely on.

[12:25 p.m.]

E. Horton: I certainly agree that that is a very significant transition point for families. We hear about it often, that despite wait-lists and other experiences in the early years, the move from that early-years period to the school system feels like a very jarring change.

The intention behind the change in services, I think, is grounded in two really fundamental pieces. The first is early intervention and the idea that intervening early and intensively can have such significant impacts that you can age out of the need for support.

The second is that children change where they spend their time at the age of six. They move to the school system, and a lot of the responsibilities for their growth and development within the hours of the school day become the responsibility of the Ministry of Education and the supports and services provided there. So that age represents the point at which children’s contexts change significantly. They are spending their time in the school system, and the school system is intended to be providing those supports.

R. Singh: Thank you for that presentation. Michelle is not here, but seeing her being such a strong woman and having such a challenge…. We talked earlier, too, talking about the vulnerable families who cannot even access and don’t even have the voice to do that advocacy.

I just want to follow up on what Ronna-Rae is saying about the funding. I think it drops from $22,000 to $6,000. I agree…. The children are full-time in school, and I see the rationale. But you mentioned, too, that there is a diversity within this autism spectrum, right? I’ve seen some kids. Somebody tells me that this child has ASD but doesn’t look like it — a bubbly child, verbal, everything. And then you see a child with severe issues — non-verbal and the behavioural, all kinds of….

I have been approached in my constituency office by some parents who are having a really hard time going through this transition. I understand that school is providing a lot of stuff, but we know that the services are lacking in the school system as well, especially speech. A lot of parents have to put their child on the wait-list for speech. They are accessing the $6,000 funding for speech, but then their child has more complex issues as well, like feeding or behaviour. How would the families come up with that? I’m sure this has come to you, but what are we doing for those children?

E. Horton: I think it’s important to just highlight that the children that are experiencing that change in funding are just a subset of the children and youth with special needs. It’s just children with autism that are receiving that sort of direct-funded piece. But I agree with you in terms of the needs within the population of children with autism spectrum disorder. It’s a spectrum, and by nature, the needs vary significantly. So we have heard similar questions regarding what factors the actual needs of the child play into their access to services. I don’t have a solution to that at this time except to say that what you’re hearing from your constituents certainly resonates with what we’re hearing from families as well.

L. Throness: Just a couple of questions. Regarding pathways to access programs, I can understand how you would define eligibility when you have a formal medical or psycho­logical assessment. I can understand a functional assessment. But for programs where no diagnosis is needed, who keeps the gate? Who says no? How do you say no? Do you say no?

E. Horton: All of those programs are contracted to community-based agencies. Within those contracts, there are very specific service guide tools and assessment procedures that are not for formal diagnosis.

[12:30 p.m.]

An example would be on the ages and stages questionnaire and assessment, where you would be able to identify…. A professional like an occupational therapist, physiothera­pist or speech-language pathologist would be able to identify whether a child had a significant or mild gap in their development and would then tailor their intervention and the level of service they have using that service guide tool that all contracted agencies would use.

There are still professionals providing standardized assessments. They’re just not for the purposes of diagnosis. They’re for the purposes of identifying the priority for service and the level of service and the nature of the intervention.

L. Throness: So not all families who approach those programs are accepted.

E. Horton: I would think that if a family had directly referred themselves to the program, the delay would be such that the standardized assessments, like the ages and stages questionnaire, would identify a similar delay, and they would have access to service. Whether they would have it immediately, I can’t say for certain. But it would be rare that a family would be turned away if they had been observing a delay in their child’s development.

L. Throness: Okay. I think that answers my second question. I think I’m okay.

J. Isaacs: I appreciate the presentation from you as well, especially the emphasis of autism because that seems to be the number one issue that you hear about with the lack of support and not really understanding what’s available.

There’s another issue that’s kind of creeping in. It’s the influx of refugees. I know that it is presenting some challenges in schools and for not-for-profits. I’m just wondering if you’re seeing any kind of a trend or a pattern that might identify that as an upcoming issue for MCFD, especially with children suffering from PTSD.

Just what group under the three groups — foundations, specialized provincial services or family support — would this group fall under?

C. Massey: I haven’t heard of an increase in demand on our services due specifically to that population.

I’ll let you speak that.

E. Horton: I, as well, have not been made aware of any influx or demand specific to the refugee population.

Where I think that their entry point would most likely be would be through foundational programs for young children, where they may still go on to have an official diagnosis by a pediatrician and assessment. They may be having trouble functioning in child care or within the community and may find themselves in our foundational program.

Those early intervention programs — that would be where I would imagine we would see refugee children appearing in the CYSN services.

J. Isaacs: I was just going to add, because I recently attended a consortium of school trustees and principals. They said it’s the number one issue for them right now, trying to deal with the refugees — the communication, the English as a second language. It’s taking a lot of resources away from a limited amount of resources as it is. Then there’s cultural differences. A lot of these children have signs of PTSD. They’re really not going anywhere right now. I’ll just leave it out there that that has come to my attention more than once now.

C. Massey: It may be those children get referred to our child and youth mental health services if they’re school-aged.

What I’ll say is that mental health issues for children before school-age often show up as behavioural issues, and they get referred to our foundational program. So you find our foundational programs dealing with early mental health challenges, as well as what you might more traditionally think of as children and youth with special needs.

T. Wat: Again, thank you for presenting such a comprehensive briefing. I learned a lot.

My question, again, is on the multiculturalism communities, especially given the increase in the immigrants from the Asia-Pacific region. Autism is a different cultural understanding. It’s like a stigma, that parents would not like to openly say that their children are suffering from autism.

[12:35 p.m.]

I wonder were there any special, again, outreach to the multicultural community to make them understand that they need to intervene their children at an early stage so that they can become a normal being to the community. I just want to know whether you have any special programs to reach out to multicultural communities.

C. Massey: I’d say right now we go when we are invited. We have one group in our ministry called Autism Information Services, and that’s a phone line where parents can call to get advice on any part of their journey, around identifying types of services they should be purchasing. We have staff there who speak a number of languages and can also access translation services. We’re also working on an updated handbook on autism that will be made available in multiple languages. But that’s probably an area where we could be more proactive in reaching out to communities.

I don’t know if there’s anything you want to add, Emily.

E. Horton: The only piece that I would add is that with the research that Christine described to help inform that service framework direction, the journey mapping with families will include some families with diverse cultural backgrounds to really uncover how they moved through the system and points at which they experienced stigma or pause or didn’t access services because of some of those pieces. We hope to uncover more information about that through the research that we’re working on.

T. Wat: I just want to make sure that right now you said that you are doing this at their request. We are not taking the initiative to outreach. I hope that….

C. Massey: Primarily, yes — correct. I would say that’s more accurate. Yes, that’s something I’ll take away. Thank you.

N. Simons (Chair): I have a question about some funding that government provided back in 2008. I think it started with $500,000 to the Pacific autism family centre, and they have received $24 million since then. What do they do, and how do they integrate with ministry services?

C. Massey: The Pacific Autism Family Network, as I believe it’s called now, received a capital grant from government some years ago towards the construction of the building that is now in Richmond. It’s meant to be a centre of excellence around autism services. It hosts a number of service providers from non-profit groups in the autism field, like AutismBC. Our ministry Autism Information Services is there.

There are a number of model providers there. For instance, there’s a dental clinic there that’s specifically set up to deal with children with special needs, particularly autism, who would otherwise have to go under special anaesthetic in the hospital and may not even there have their needs met. Hospitals are very busy, noisy places. There’s also a LifeLabs there that’s available to take blood from children who can’t otherwise access special services.

That’s the centre in Richmond. They’re also establishing a number of what they call spokes — kind of a hub-and-spoke model — around the province so that they have some centres in other areas of the province that can also provide some centres of excellence services for parents.

N. Simons (Chair): Are they actually providing services right now?

C. Massey: They’re not a service provider as much as they are a congregator of services.

N. Simons (Chair): So are they working with the ministry? Are they taking the role of the ministry?

C. Massey: No, they’re independent. They have their own governance and board and the ministry as a tenant. They would be one of the groups we would work with, like AutismBC, in terms of getting information out to parents.

N. Simons (Chair): So they don’t provide direct services, but they refer people that otherwise wouldn’t be going through the ministry. Is that correct?

C. Massey: No, they don’t provide services. They’re trying to bring a number of agencies together within the autism sector, which is very diverse, to collaborate on providing a higher level of service to parents.

Like I say, they’re more like a…. They bring partnerships together.

N. Simons (Chair): So MLAs shouldn’t refer families to the Pacific autism family centre for referrals or advice?

C. Massey: They could. I would recommend you refer them to the information services B.C., which is what MCFD offers. We try, through that, to be an objective, unbiased source of information for any parent. And if they got referred to Pacific autism family centre, they’d probably refer them to us.

[12:40 p.m.]

M. Stilwell (Deputy Chair): I was just going to say…. The assessments don’t happen there. The services that are being delivered aren’t necessarily MCFD services, like the LifeLabs. If you have a child with autism who has high anxiety, they have specifically trained individuals there to get and draw the blood. It’s the same with the dental program that’s there. They also have activities and groups for families to connect and learn from each other. Also, they have groups for the autism community. They have a gaming group, a coding group. They have music therapy there, things like that.

N. Simons (Chair): Is this eligible for provincewide?

M. Stilwell (Deputy Chair): Families could use their autism funding to pay to have the music therapy or the physiotherapy or occupational therapy that is delivered out of the centre. The idea behind the centre was to bring everyone together in one spot and coordinate, because the autism community…. As it has grown over the years, there have been many facets of different groups and organizations who have decided to become fundraisers and advocates. It’s trying to bring it all together in one place, because as a parent, with autism, it can be very overwhelming to know where to go for that information, and every community is different.

They’re also a learning centre, so they have a video conferencing room in there, where they can actually deliver keynote speeches and webinars from experts that can be delivered to the hubs — in Prince George, or I think there’s one coming in Nanaimo, or on the Island. The idea is about ensuring that people know and learn from the sector.

T. Wat: Chair, can I add my personal…?

This centre of excellence is located in my riding, so I actually was at the opening and visited it several times. I find that this is really a good model. I don’t know how many of these are now available, because it’s supposed to serve not only Richmond; it’s supposed to serve the whole province. I find that it’s like one place for everything.

I have to give credit to this centre, because they are reaching out to the multicultural communities. They do organize events, which I attend, that invite specific multicultural com­munities there. They have different kinds of services there.

Personally, I see it as a good model. I don’t know whether the ministry has plans to work with other non-profit organizations to set up more of this kind of centre throughout the province or not.

N. Simons (Chair): Go ahead, Emily.

E. Horton: I think it’s worth noting that we do have a network of child development centres across the province that are not specific to a single diagnosis or designation. While I know that the autism network would certainly welcome a child that doesn’t have an autism diagnosis, absolutely….

That idea of bringing together services in one place, that model, does in fact exist all throughout our province, but it doesn’t have specifically the name autism attached to it. It’s really about…. You’ll hear names like child development centre or early intervention and development centre. So we have a network of about, I think, 40 or so of those child development centres across B.C. that are intended to be like those hubs.

N. Simons (Chair): Just to go back, the spokes operated by the Pacific autism family centre…. Are they identified anywhere in the province? Are they accessible by families who need support? Are we duplicating services? Does it go in partnership with other programs? Are there services available to British Columbians or just the people in Richmond?

C. Massey: The spokes are in development. I’m not sure if…. Member Stilwell may know which ones have been launched. I’ve been in discussions recently with the leadership at PAFN to make sure we’re not duplicating. For instance, with our autism information service, there should be no…. We should be able to not duplicate if they’re trying to do referrals and information services through their spokes. So we’re trying to coordinate, because we can’t afford to duplicate in this area. Some of the spokes may be set up, and some are still under development.

N. Simons (Chair): Any other questions, committee members?

We really appreciate your review of the services, and we look forward to working together as we identify places, issues in the sector. Thank you very much for being here, Christine and Emily.

Let us now take a five-minute break to determine what we’re going to do for the next…. We have lunch ready, so let’s call our lunch recess. If the rep’s office is okay with that, we’ll just have half an hour.

The committee recessed from 12:45 p.m. to 1:20 p.m.

[N. Simons in the chair.]

N. Simons (Chair): I hope everyone had enough sustenance to get us through the next part of this proceeding. We are proceeding to the next item on our agenda, which is a briefing from the Representative for Children and Youth on youth with special needs.

Welcome back, members of the representative’s team. I’ll let you do the introductions.

OFFICE OF THE REPRESENTATIVE
FOR CHILDREN AND YOUTH

J. Charlesworth: Thank you. Since this morning, Blair Mitchell has joined us. Blair is the executive director of advocacy, and we thought it important to bring, through him, the perspectives of families and caregivers and young people within the child and youth with special needs system and their efforts to access the services.

Thank you again. I think the committee has made an excellent choice to focus on this area for its special project, and I commend you for that. In addition to consulting with our office and the ministry, I encourage the ministry to reach out to service providers, agencies, the education and health systems and, most importantly, families themselves to gather their perspectives.

Deep gratitude to you, Michelle, for speaking about your experience and how important it is for us to hear the stories and the realities for families who are working in the best ways that they can, in support of their children and youth that they love.

As you can appreciate, there’s a lot of pent-up interest out there in seeing improvements made to this provincial system of supports for children and youth with special needs and their families. I just wanted to put in context…. You heard that the ministry budget is $356 million for special needs. This is within the context of an overall operational budget of $1.8 billion. Important to understand the context there.

As I mentioned earlier, the tyranny of the urgent — which, in MCFD’s case, is child protection matters — can often keep the focus off of services to children and youth with special needs. That includes in our office as well. Sometimes we focus, in our reports and investigations, more on the protective side of things. So we were happy to bring Charlie’s report forward.

That is understandable, but I think it’s prudent that the committee is choosing to focus on CYSN specifically. As you’ve heard from the presentation about Charlie, Alone and Afraid, and as you’ve heard from the ministry, there were a number of systemic challenges that contributed to the difficulties families often experience in accessing and navigating the CYSN services.

Nicholas, you mentioned past reports. There are several past reports that I’ll just bring to light.

Lost in the Shadows was released in 2014. This report told the story of an Indigenous girl whose intellectual disability and mental illness were not adequately addressed and who subsequently committed suicide. It details the challenges associated with providing services to First Nations children and youth living on reserve. The lack of services and supports provided to the girl and her caregivers suggested that she was invisible to service providers and that her family didn’t receive the necessary supports to help them cope with her vulnerabilities.

Who Protected Him? was released in 2013. This report told the story of a boy with significant special needs, including hearing loss and intellectual disability, who was severely mistreated while in MCFD care. It highlighted the use of inappropriate behaviour management techniques by caregivers, underlining the necessity of foster care placements to be specifically designed to meet the special needs of children with disabilities.

The next one, Isolated and Invisible, which was referred to by Jessica, was released in 2011. You also referred to that one. This report told the story of a girl with significant developmental delay and hearing impairment, who was severely neglected.

[1:25 p.m.]

Viewpoints of significant individuals in the girl’s life appear to be ignored, and service providers failed to physically see the girl, as was pointed out this morning. The vulnerabilities of the girl’s mom, including poverty and chronic health conditions, did not appear adequately considered.

As I go through my presentation, it’s important to be mindful that current CYSN uses a narrow definition of disability services based primarily on a diagnosis and on a need. This cuts across both child and youth and adult services.

When we consider our obligations under the UN convention on the rights of the child and the UN convention on the rights of persons with disabilities, it’s important to be inclusive in our service delivery systems of all children with disabilities and build a system that’s responsive to needs and not driven by diagnosis. I recognize that the foundational programs are not driven by diagnosis to the same extent, but nonetheless, as we talk about many of the services, they have a strong diagnostic element.

The challenge. The ministry has done a good job of pro­viding you with the lay of the land. Thank you for that. I’m not going to repeat information, but I will focus on areas that, in our view and our experience, require attention. Now, I want to affirm the ministry’s presentation of the challenges. Its services are oversubscribed and underfunded. There are long wait-lists, diagnostic-driven criteria for some services rather than eligibility based on need or functional assessment, high caseloads for CYSN workers, the increasing population of children and youth with special needs and, from there, the increasing complexity of these needs and, as was referred to, the co-morbidity or co-occurring conditions that young people face.

From our perspective, the challenges families experience with CYSN services can be broadly placed into…. I had, actually, three general categories. I’ve added a fourth category: assessment and eligibility, access, case coordination and system silos, and in light of what we heard this morning, I want to add family support as well. I’ll speak to each of these, starting with assessment and eligibility.

In B.C., whether a child receives a timely assessment for special needs can depend on their parents’ knowledge of typical and atypical child development and their ability to express concerns to a family physician or qualified health professional.

Just in the break, Joan and I were talking about: how do you know, if it’s your first child? You might not have the experience, depending on whether you’ve got family support around you, to know. “Is my child’s behaviour typical or atypical? Should I be worried? Is it just a developmental blip?” That’s a challenge. It’s particularly so when we think of the number of families that don’t have a regular family physician as well.

There is limited developmental monitoring in B.C. for infants and young children and no universal touchpoints for children between 18 months and school entry. If a parent does express concern regarding the development of their child, a referral from a medical practitioner is required in order to obtain further assessment. And again, if you’re going into a walk-in clinic, as Charlie’s mom did, what might be the possibility of getting that kind of referral?

In the case of Charlie, the boy who was the subject of our Alone and Afraid report, as you know, a physician in a walk-in clinic was concerned about his atypical development, but there was no indication that we found that there was a referral for assessment. Charlie’s case is an example of where earlier assessment might have prompted earlier interventions that could have changed his life trajectory.

As you’ve heard already, there are two types of developmental assessments. I’m going to talk just briefly about each of those.

A functional assessment is an evaluation of functioning across a number of domains by a designated professional. It could be a pediatrician. It could be a physician. It could be a CYSN worker. This type of assessment is required to determine eligibility for some CYSN programs. Functional assessment results are evaluated by the CYSN service providers, as Emily mentioned, who determine whether, on the basis of that assessment, that child is qualified for services or not.

In Charlie’s case, we felt that the assessment tool that was used was subjective, was not based upon observation of functioning and resulted in scores that were inconsistent with and did not account for his family situation. This included the family’s capacity to manage Charlie’s significant needs and the additional costs while living in poverty and facing multiple other challenges.

In some cases, we’ve observed that eligibility decisions based on functional assessments appear arbitrary and may be too restrictive. We see differences across the province and, as is noted in the report, sometimes those assessments of priority are determined based on the number of children that are presenting for services rather than their actual needs.

[1:30 p.m.]

Moving on, MCFD’s At Home program provides medical benefits and respite benefits to eligible families, but eligibility for those benefits is determined by an assessment of a child’s dependence on others to manage activities of daily living — eating, dressing, toileting and washing.

Children who are fully dependent in three of those four categories, as Charlie was found to be in the first assessment, are eligible for a choice between medical or respite benefits. Children assessed to be fully dependent in all four areas of daily living, as Charlie was in his subsequent assessment, are eligible for both medical and respite benefits.

In our view, these eligibility requirements are unnecessarily restrictive. For example, it’s unclear to us why children who are partially dependent in these areas for daily living are ineligible for such benefits or why children who are fully dependent in three or four areas do not qualify for both medical and respite — in light of what we were talking about, the importance of respite.

Asking parents of children with complex needs to choose between medical and respite seems to be unfair. Faced with that choice, most parents choose medical benefits because it’s immediate and because they need supplies — such as walkers or standing frames or toileting assistance, etc., hospital beds — and therapy equipment, including things like therapy balls or floor mats. So they’re choosing the immediate because that is what’s readily available. Even if they were to choose respite, there’s no guarantee that that would come within a reasonable period of time. When you think of it from your own perspective, what might you choose?

Despite the challenges with the current assessment approach and use for some CYSN services, functional assessments can be extremely valuable as they can paint a realistic picture of the child’s functioning and what is needed in order to develop their well-being and further development. The issue may well be around the assessment tools as opposed to the idea of functional assessment.

In fact, one of the pediatricians that was on our multidisciplinary team, one of the advisors for the Alone and Afraid report, speaks very positively and highly about the importance of functional assessment, because then you begin to understand the child and their capabilities — their strengths as well as their challenges — in context. What’s it like in school? What’s it like at home? What’s it like within their community? It’s important to have that as a key part of the assessment process but also recognize the limitations with some of the tools in use.

The second approach, the diagnostic assessment that was referred to in the ministry’s briefing, involves standardized testing by registered diagnosticians. This is required to determine eligibility for some CYSN services. Now, as Alan mentioned and Christine noted, to complicate matters, these diagnostic assessments are done through the health system, and there are often significant wait times for such assessments. Even after they are conducted, the eligibility is still an issue for some children.

We’ve collected data that show that wait times for assessment for autism spectrum disorder and assessment for complex developmental behavioural conditions can be more than one year. And when, again, you think about the importance of early interventions to affect the developmental trajectory, that’s a huge period of time in the life of a child.

Within that period of time, services aren’t offered when the child is waiting for a diagnosis, which can result in a loss of considerable funding and a loss of crucial time in which developmental issues might be mitigated. While waiting for the assessment, children’s needs do not change and families continue to struggle, placing more strains on families and taxing their ability to continue and to cope.

In Charlie’s case, at the age of four when he was referred for assessment, he would have been eligible for $22,000 in the under-six autism funding. However, by the time he was diagnosed 19 months later, he had turned six and was eligible for only $6,000 a year in funding.

Similarly, a child suspected of having fetal alcohol spectrum disorder, who would benefit from the key worker program, would not be eligible for this program until being diagnosed. Current wait time for this assessment is approximately 15 months. So there is a significant period of time there as well. That speaks to the diagnostic piece or the assessment piece.

Moving on, the second concern is access to CYSN programs and services. As we have heard, access is limited, and there are often long wait-lists.

[1:35 p.m.]

In Alone and Afraid, RCY investigators learned that in some regions of B.C., families can wait five years before receiving direct funded respite benefits under the At Home program. And despite having a child with complex needs, Charlie’s mom did not ever receive the respite benefits. As we’ve heard before in the earlier discussion, MCFD doesn’t centrally track respite wait-lists or wait times, so a full understanding of that need is not known to us.

Wait-lists through the At Home program are regionally managed. Therefore, MCFD doesn’t accurately track the number of families in B.C. waiting for respite, how long families have waited or the difference in wait-lists and times across service delivery areas. This makes it impossible for MCFD to evaluate how effective or accessible this program is or to determine how much funding would be required in order to sustainably fund this program.

A family’s vulnerabilities may also impact their access to programs rather than access being based on actual need for services. For example, families living in poverty, such as Charlie’s, may feel pressure to choose medical benefits over respite because it may be the only way for them to purchase medically necessary services for their children. And poverty may prevent a family from getting to and from community programs and services. Housing instability may disrupt services if families move between service delivery areas and must change service providers, so access becomes a critical issue. And of course, access, if we start to think of rural and remote communities, is even more complex than that.

The third area is service coordination in silos. Gaining access to services and coordinating these services can be a full-time job for parents of children with special needs. I was struck by the comments that even when you have tremen­dous capacity and skill and are savvy at navigating systems, just how difficult it is — and even knowing what to access and who to trust. I can say that within this area, particularly in autism, there are lots of different perspectives on what the right thing to do is, and it’s very difficult for parents to know what they should be accessing for their child. And of course, vulnerabilities including poverty, parental mental illness or substance use may prevent a family from being able to do this.

Our investigators learned that a sizeable number of B.C. families eligible for autism funding do not access it, as was the case in Charlie’s situation. The narrative is often focused on the family being unable to access the services as somehow the family’s failings, rather than looking at the system and what it’s doing to make it more difficult or less difficult for a family to access services.

Of course, when we take a look at the systems, we find that the tasks associated with the funding, including filling out forms, finding service providers, determining whether those service providers meet the CYSN qualifications for contracting, scheduling, retaining those services and paying out of pocket are a huge challenge. So despite direct funding, respite requires the parent to be responsible for employer-to-employee responsibilities, and that in itself is a daunting task. Imagine you’re a parent, and now you’re an employer.

High caseloads prevent the CYSN workers from being able to act as system navigators for most families, which is why one of our recommendations of the Alone and Afraid report was to offer a case manager option. Some families are quite happy to take that on for themselves. That is their preference. But for families such as Charlie’s, being able to offer that and having somebody walking alongside could have been a significant game changer for them.

Anecdotal evidence also suggests that access to CYSN services and supports may be limited for parents and family members who cannot actively advocate for their children with special needs. So the strong parental advocates often are able to navigate a system with more success than those who are unable to advocate for themselves.

In consultation with our multidisciplinary team for Alone and Afraid, researchers and parent advocates revealed that it’s often necessary for families to advocate for services and supports for which their children should be automatically eligible. Parents who are able to research those available supports continually call their CYSN workers to request services and recruit allies that are more likely to be able to support them going forward.

[1:40 p.m.]

Having said that, there are also some parents that are afraid of doing that because they feel that there may be repercussions or consequences if they become the squeaky wheel or the difficult parent. We can imagine and put ourselves in that parental situation.

Now, MCFD, Health and Education all provide various services to children and youth with special needs, but a lack of communication and integration between these ministries and even within ministries can create barriers for services to children and families.

As in Charlie’s case, children with special needs who are home-schooled by their parents may not receive the supports they need to thrive. Home-schooling is a legitimate option that many parents choose for a whole variety of reasons that we could discuss, but they then aren’t accessing the kinds of services and supports that are supposed to be available for a school-aged child.

It’s possible the lack of communication between child-serving systems also contributes to a limited understanding of the ways that a disability impacts a child or a family’s life. In some cases, such as Charlie’s, no one service provider has a complete picture of a child and their family. That’s why we think it’s important to think about different ways of providing that case coordination and reducing the silos.

I want to speak just briefly, too, about the fourth one that I added as a result of our conversation this morning. That is pertaining to families. You’ve heard through the comments before how important it is for us to understand the family’s context and the family’s dynamics but also to understand the journey that they’re on alongside their family as well.

When I think of the binder…. I will carry that image of being presented with the binder and of: “Here’s what you have to look forward to.”That can be a daunting undertaking for any family, so when we think about the ways in which we might be able to support families as they go on that journey to see the strengths and the delights of their child and also to be able to navigate the systems and the services….

Of course we want a system that is more accessible and more streamlined, etc., and not patchwork, as was described earlier, but we also need…. We can’t underestimate the importance of those human connections and that relational support in going through that. So I think that’s a fourth area that I’d like to bring forward for your consideration.

That ties in to what our advocates see. The people closest to the ground who see and hear every day what families are dealing with are our advocates. In preparation for this, we asked for their input on common issues that they see in the CYS stream. We’ve got lots. One of our advocates has been collecting things for ten years for us for these opportunities. Some of the things our advocates are seeing, I think, are very important to bring forward as you consider the areas that you might want to focus your attention on.

As a result of inadequate CYS and services, children with special needs sometimes find themselves in the child protection steam and eventually end up in care. There’s a lack of specialized foster homes or residential resources that have skilled staff able to provide the type of care required for the most complex children and youth, and some parents have a fear of losing their child to care if they speak up and if they ask for services.

Funding and support levels that are provided to foster families are not provided to families, leaving families feeling forced into special needs agreements. Some families even report to us that they place their children in care in order to be assured of a high level of support from CLBC post 19 years of age. Basically, the message that is in fact conveyed by some advocates to parents is: if you want to gain access to CLBC and not drop off the cliff, you need to put your child in care.

Parents of children with special needs are often exhausted from caring for their child, yet are being asked to navigate an enormously complex funding system. On top of this, there are inequities in the way special needs are funded and addressed, and supports available go primarily to children with a diagnosis of autism or developmental intellectual disability. I’ll come back to that in a few moments.

There are a number of others, and it’s not to say for a moment that that isn’t absolutely appropriate, but it does mean that there’s a wide spectrum of children and youth with special needs that are not getting the same level of care.

Nursing support services staff is very important, and we think that they are inadequate — nursing support staff levels to cover the actual need. Now, 24-7 in-home nursing care is not available, putting a burden on working and often exhausted parents.

[1:45 p.m.]

Funding for the CYSN program stops at age 18, which is an interesting thing given that services in other areas go to 19. Youth transitioning from MCFD care to CLBC experience a difference in service and support levels due to different budget formulas and allocations. It’s a very different system, and it’s a very difficult thing to navigate going forward. Services and supports are still woefully inadequate on reserve for Indigenous youth generally, specifically for those transitioning to CLBC.

Even when families receive respite hours, they can sometimes struggle to find appropriate respite caregivers. This is often exacerbated, as we’ve mentioned before, when living in more remote or isolated rural communities. And sometimes there’s a lack of transparency or collaboration between child protection, CYSN and CYMH in resources. I know Blair could give you lots of examples of that.

Those are some of the things that our advocates are seeing that I think are worthy of consideration as you go forward.

There are a couple of things that I think are important to raise here. I want to speak about FASD. We haven’t really spoken much about that. Our view is that another key shortfall in the system that has been consistently identified by our advocates involves children and youth with fetal alcohol spectrum disorder.

Children and youth with FASD are unable to access most CYSN services unless they are also assessed with other issues such as dependency in three or more of the four areas of daily living or an intellectual disability. So an IQ under 70. When we look at the CYSN budgetary allocations, we see a stark contrast with FASD services. FASD services receive $5.8 million. That is a pretty small amount of money.

Let’s take a look at the autism funding program, for example, at $81.7 million, that’s then complemented by the family support services funding. Now again, this is not to suggest that this is an issue with autism funding. It’s an issue with FASD funding and funding for a broader array of disabilities.

Parents, extended family caregivers and adoptive parents all face barriers when trying to receive appropriate services and supports for their child who lives with FASD. This becomes particularly acute in the teenage years, when our advocates see, time and time again, placements breaking down with foster families or with biological families, with grandparents, extended family members. Children end up in care and cycle through placement after placement.

We’ve long believed that these children are deserving and need care and supports that they aren’t getting. We’re actually starting to take a deeper look into this. Our monitoring team is in the early stages of scoping out a research project that will examine the lived experience of a select number of children and youth with FASD in the current system of care. Central to this research is the concern that currently there is no clear pathway for services and some pretty restrictive criteria.

The research will identify and assess the current provincial level of supports, including diagnostic services, assessments and the key worker and parent support program. The goal is to determine if such supports are sufficiently appropriate, available and accessible. A major question that we’re taking a look at is whether the current FASD system of care serves the young people or if it results in barriers in the moment and in their lives.

Currently there is little research that includes the voices of the families and young people living with FASD. As you can appreciate, there is often a lot of stigma that’s associated with FASD, particularly for the parents. That actually influences whether or not a diagnosis can be given, because there is a dependence on a parent indicating: “Yes, I did use substances. I used alcohol within the pregnancy.”

As you can appreciate, that’s problematic. In fact, it’s problematic given the existing research, as well, on the phenomenon of FASD. So that’s a key area that we wanted to raise and elevate for your consideration.

Finally, I wanted to talk about promising practices, because I would encourage you to think about, as you’re taking a look at this, what is going well or what can be amplified or scaled up. Our staff identified a few that we just wanted to raise for you. These are important because we think that there might be opportunities to at least learn from them, if not expand them.

[1:50 p.m.]

It’s important to take a look at areas beyond CYSN too, to see if there are some things that could be learned from other promising practices that might help with the array of concerns that we’ve identified.

A couple of things. We do want to applaud B.C.’s infant development program and the Aboriginal infant development program. We think that they’re an example of a program that has tremendous potential to address the access-to-service issue. In addition to the delivery of those services, we think that they can actually become a key touchpoint. That’s something to consider. What are those touchpoints in which a family might get the support they need?

These IDP programs support families of infants and young children who are developmentally delayed or are at risk of developmental delay. IDP consultants carry out developmental screening which facilitates the early identification of special needs.

They also provide a range of services, including an individual plan, created in partnership with the families, that outlines the developmental goals and the services that will be provided to help the child and family meet those goals and the ways in which the parents can be supported as well. They provide systems navigation support, and they can refer to other therapists and are knowledgable about the array of community programs.

If you’ve ever spoken to an IDP consultant, they are passionate about this work, and they do a tremendous…. Many times, they have been in for decades, and they are very committed and very engaged within their community to assist from the point of view of navigation.

One of the great strengths of this program is that it does not require the family to go to MCFD for referrals for supports. As we know, families can be reluctant to do that. Families can self-refer and have access to services through their local child development centres, and they’re located around the province. So that’s one worthy of consideration.

The STADD program, which was referenced in Charlie’s report — services to adults with developmental disabilities — is another example of a B.C. program that helps to break down service provider silos.

You’re smiling. You may have experience with this.

It provides service navigation to families of CLBC-eligible children before transition to adulthood and beyond that transition.

Actually, now I’m thinking you probably brought it into effect. Okay. Now I get it. Great job.

STADD consists of multiple government service providers who work together with the guidance of a STADD navigator to support a young person. They meet with the youth. They meet with the families, their network of service providers, to discuss the goals for adulthood and facilitate access to supports that will allow the young person to meet their identified goals.

Remember we’re at a point in which, developmentally, self-determination is very important. So their inclusion and having the support of a navigator is critical.

Currently STADD is available in 116 B.C. communities, although there is potential to expand the program to meet the needs of more B.C. youth with complex care needs. So a very interesting model.

We’re going to go outside of the province now, to my predecessor’s home province of New Brunswick. The Family Supports for Children with Disabilities program in that province is another example of a program that we think helps break down silos in service systems.

This program provides services to children and youth with special needs and their families, based upon an eligibility assessment provided by a professional, such as a pediatrician or psychologist. Then it provides an array of services — respite, medical equipment, child care services, therapeutic recreation, among others. It’s a completely voluntary program. Parents, or family members and caregivers, are left with the opportunity to determine the amount of involvement they want.

They can choose from two service delivery models: either a family-managed support option or a social worker case-managed option. Again, another example to think of what the options would be that we might be able to offer to families.

In both models, families work with their social worker to develop a family support plan that identifies those unmet needs and services required. But there is, obviously, an opportunity for a family that might be struggling to deal with all of the things that are on their plate to have someone be more engaged in case management.

We need to look to other sectors for promising practices as well. In the child and youth mental health sector….

[1:55 p.m.]

The Foundry was noted earlier. I think the Foundry model is being implemented in a way that can also be learned from. It is an integrated service delivery system that brings together different services across service delivery streams — Health and MCFD, for example. It’s a place where children and youth can have multiple needs met under one roof and where community comes together to create solutions. They’re very individualized by the community and what’s accessible there — so what can be learned from models like that.

Just a couple of things to conclude. You’ve probably heard enough from me today. As you’ve heard from both the ministry and from our presentation, there are many challenges. This is going to be a fascinating area for you to pursue. They’re not solely the responsibility of MCFD, though. You may want to reach out to Health and Education. I think that’s important because, of course, in school hours, Monday to Friday, a child’s development and well-being are very dependent upon the supports and services that they are offered in their school system. Similarly, access to many of these supports require a diagnosis and wait times, and that’s where the Ministry of Health comes in. So it’s important to consider that.

Of course, I also think that it’s important to consider those community-based organizations. As was noted before, the foundational programs are delivered entirely through the community-service-providing organizations. They’re obviously a key player in this whole complex area.

To conclude, of course it’s complex. It will be a challenge to scope this in a good way. But I also think that the timing is impeccable in that we have the report before the ministries. We have the openness and the work that’s already underway in terms of their service framework. And I think there’s a readiness and an openness to consider this in a different way. So we are hopeful that this will lead to very good outcomes. And of course, there’s so much at stake that this is an essential area to put time and energy to.

Now, we have a number of people. In fact, some of the staff, as well, are very familiar with this area. So we have lots of capacity to address any questions that you have. You may wish, also, to get the perspective from Blair, from the advocacy side of things, if you’ve got some more questions from that vantage point.

Happy to answer any questions.

N. Simons (Chair): Well, thank you very much. We all really appreciate that overview.

I have an initial question. Maybe Blair has an answer. How many CYSN advocacy calls do we…? We probably have a breakdown. What percentage of the advocacy calls…? It’s right in front of me, probably.

Jennifer, you did mention some thematic elements to those calls. What would you consider is the thing you hear about the most from families?

J. Charlesworth: I will look for the number. Blair will answer that question.

B. Mitchell: Thanks, Nicholas.

In terms of the themes, I think what stands out the most is that families are exhausted. They’re tired from the day-to-day lives of looking after a child or children with complex needs, both in terms of special needs but also behaviour. And then to have to navigate the system and what that means in terms of who to go to for supports and services, who to reach out to for help — I think that really is the overwhelming reason why people reach out. They just don’t know where to go or how to get the right kinds of supports. Or even if the supports are available but it doesn’t seem to be helping, but they’re told that that’s all that’s available. I think, really, that’s the main reason why people reach out.

Other reasons they’d reach out are…. They’re looking for supports from the ministry, but they don’t feel like they’re getting the right kinds of supports. Quite often, parents will talk about: “When my child was in care, they received X amount of supports in the foster home. And now that I’m looking after my child again….” Or if it’s an extended family member that’s looking after the child, post coming out of care, or a family arrangement, they feel like they’re not getting the same level of supports that the child got in the foster placement or what’s offered to a child if they’re in ministry care.

[2:00 p.m.]

We get a number of calls about supports and services offered to children that are in schools. Our mandate doesn’t extend to the education system, so it doesn’t allow us to necessarily get directly involved in advocating on behalf of those children. In those situations, we get in touch with the CYSN social worker.

I think what that points to is a real challenge in the system. The parent feels like they need support in approaching the school around how best to have issues addressed, but the CYSN social worker is not an advocate or a navigator.

There’s a bit of a gap in terms of, again, when you look at the nature of how services are delivered and how people need support in different service settings. They’re not getting that level of support from the CYSN worker because they just don’t have the capacity do that, nor is it their role.

Did you find the numbers?

J. Charlesworth: I didn’t find the numbers. We’ll have to get back to you.

N. Simons (Chair): That’s okay. Thank you. I was just curious as to, approximately, if it was half the calls. I imagine….

B. Mitchell: I wouldn’t say it’s half the calls. I think, though, that we get lots of calls about child protection, guardianship, but often those children have issues related to having special needs and/or behavioural issues. In a roundabout way, we get many, many calls with regards to children with special needs and how their services are delivered. It’s probably not…. It wouldn’t be half our calls. It would be less than that.

N. Simons (Chair): A challenge facing our committee is to not necessarily narrow but focus our review of our study on an area that we feel would be not just useful and productive but…. Obviously, useful and productive — and enlightening.

I wondered if my committee members might have some questions that will help us focus that. But maybe Alan can….

A. Markwart: Well, I just wanted to add a point to Blair’s around the issue of respite. As the ministry said, the amount of funding involved…. Well, number one, there are very long wait-lists and sometimes wait-lists up to five years. The amount of funding available is $2,800 a year. That level of funding actually goes not back years. For decades, as far as I know, it hasn’t been increased.

If you look at autism funding of $6,000 a year for the over-sixes, that goes back to the 1990s. It hasn’t been increased since then. For the under-sixes, it used to be $20,000 year. That goes back to the 1990s. It was around 2008 or so that it was increased to $22,000, but it hasn’t been increased since. So it’s not simply an issue…. It’s the amount of the allocation.

Also, full disclosure. I’m the adoptive parent of two former children in care, both with FASD, so I can certainly relate. I had difficulty making the system work, and I was ADM at one time responsible for CYSN.

I’d also like to highlight the issue of FASD and the inequitable treatment. This is not a race to the bottom. But certainly in terms of the level of service available to children with FASD compared to those with autism or those with a developmental disability, it kind of pales in comparison.

Again, if you look at the issue of respite and the criteria for respite — the issues of toileting, feeding, dressing and all of that…. It doesn’t speak to — and this applies to both autism, FASD and developmental disabilities — the issue of emotional and behavioural regulation or dysregulation and how it is just exhausting for parents. Yet oftentimes parents don’t qualify at all, simply because of the criteria.

[2:05 p.m.]

I’d also like to add, just on Jennifer’s comment about some­times parents having to put their kids into care in order to better facilitate access to CLBC services. That’s also true, where parents are sometimes forced to put their kids into care in order to access MCFD services, particularly residential services. It is, frankly, inappropriate and, I think, insulting to some parents to have to say they are unwilling or unable to care for their child in order to access appropriate services.

We don’t do that, for example, with addictions services. You know, if a youth needs to go into detox or into residential treatment, the parents don’t have to say they’re unable or unwilling to access those kinds of services.

Anyway, that’s my spiel.

N. Simons (Chair): That’s insightful. Thank you very much for that.

J. Charlesworth: Could I just add one more thing?

N. Simons (Chair): Absolutely, Jennifer.

J. Charlesworth: Just one more thing, too, that it’s important to bear in mind with the FASD. I’m hearing a theme here, and we’ll certainly bring back to this committee the results of our review. But, of course, there is a disproportionate number of Indigenous children that are facing that challenge as well, so it’s important to think about equity of access to services that will support the developmental and the lifespan opportunities and the complications of not providing supports to that population.

N. Simons (Chair): I wonder, if we were to ask CYSN social workers, what they would want to see different in their practice, if they were able to change something. I think it would be somewhat telling, because oftentimes we hear the issue really comes down to available resources. I don’t know social workers who wouldn’t want to provide everything if they could. I’m wondering if somehow we could get some answers with respect to that. Is it just simply money? Is it…?

I remember respite was the best tool a social worker had. You know, you get rid of the immediate major concern, and then you work on…. The pressure is off. So I don’t know if our study is just going to say we need more money. I would rather it have some sort of nuance.

B. Mitchell: Since the report was released, we have had calls from CYSN social workers, and they report feeling very concerned about children on their caseload, that a similar thing could occur. They are concerned about the increasing complexity of the children and youth that they serve, when you look at priority tools and them feeling just overwhelmed with the high levels of need and the increasing complexity. All of that is then hugely exacerbated by the caseload number, which can be anywhere from 120 to…. Some people have reached out and called us to say it’s over 160 and 170 for themselves.

I think, since we released the report, we have had some contact from social workers. They do feel very concerned about the services that they’re able to provide and that they’re just not able to provide the type of support that they really, truly, as a social worker, would want to be able to provide families and children.

N. Simons (Chair): I would love it for our committee to ask to talk to social workers to get their perspective.

Now, we have a few questions from committee members.

M. Stilwell (Deputy Chair): I just wanted to clarify, and then a comment to follow.

Autism funding. You cannot use it for respite, can you?

N. Simons (Chair): No.

J. Charlesworth: Right.

M. Stilwell (Deputy Chair): Maybe that’s something we need to explore, because maybe allowing a family member to use $1,000 of their autism funding to give them the respite so they can recharge so that they can better then manage the other remaining $5,000, or, if it’s under $6,000, the $21,000. Just something to explore and consider to support those families.

Then, Alan, I thank you for sharing your personal reflections on raising…. Two boys, did you say?

A. Markwart: A boy and a girl.

[2:10 p.m.]

M. Stilwell (Deputy Chair): A boy and a girl.

And acknowledging that the funding hasn’t changed. That is a huge challenge, though we also have to always remember and acknowledge that the huge challenge is that…. In 2002-2003, we had 250 children that we supported with the funding. We now are upwards of 15,000, and that’s a challenge for government, to find those resources as costs increase across the board for health care and education and everything else that government has to disburse to. While acknowledging that, how do we find ways to open up other avenues to access that funding?

Then one final thing. I’m not sure I want to bring up ICM, but we’re going to bring up ICM.

N. Simons (Chair): You can. Integrated case management.

M. Stilwell (Deputy Chair): Yes, for those who are listening, the integrated case management system that is really supposed to open up those communication pathways and the abilities for crossover. Dare I ask how that is going and if there are continuous improvements coming to the program to allow for that intercommunication between ministries?

J. Charlesworth: I’m assuming you’re looking through me to the ministry folks. Not between ministries, for sure, because….

C. Massey: There is a program to continually add on and expand ICM. One thing that we’re currently working on is how services for children with special needs are documented in ICM, so we anticipate having a better handle on some of the wait-list issues that have been raised repeatedly here with the next update that I think is scheduled in March. But the issues were raised around communication among the different MCFD professionals using ICM. There may be more we could do there, because that was certainly one of the issues in the report that was just presented by the representative: communication among MCFD professionals in different parts of the ministry.

J. Isaacs: With respect to fetal alcohol syndrome and, obviously, a high concentration within the First Nations community and funding limitations, have you…? Is there any intention or possibility of speaking with the First Nations and Inuit health benefits? Is that a pathway to get a little bit more funding to help, particularly in that issue that you’ve raised?

J. Charlesworth: Well, certainly, in the review that we’re doing and the scoping — we’re in the scoping process right now — we can bring that back in terms of taking a look at the broader landscape. Of course, our mandate doesn’t extend federally, so we wouldn’t have an opportunity to speak or to make recommendations at the federal level.

Certainly, we’ve got connections with the First Nations Health Authority and with the ministry’s intergovernmental negotiations. So I think that could definitely be within the scope of what we take a look at to describe the landscape of what’s available. But nonetheless, I think it’s important that we recognize that FASD is underserved no matter where you look, federally or provincially.

N. Simons (Chair): I would add underdiagnosed in some communities more than others, where the focus sometimes goes, and I think it’s important to point that out.

Ronna-Rae, then Laurie.

R. Leonard: I think I’ll pass. I heard some points that I was thinking about touched on by the previous questions.

L. Throness: Just thinking, Chair, how we can focus our efforts on committee to make them fruitful. I’m wondering if we should focus on the most severe challenges in the CYSN framework and areas of greatest need. I can think of, perhaps, two, being FASD and autism. Either we drill down…. For instance, I heard somewhere that people are diagnosed with autism today who would not have been in prior years and that the scope of diagnosis has broadened a lot. Maybe we should drill down and have a look at that, or something like that, and perhaps propose changes.

I like what you say, Chair, about just asking for more money. We can always ask for more money. That’s the easy thing. Money takes care of a lot of problems, but money is always the problem.

Would you say, Doctor, that the most severe challenges in the CYSN service framework are around the areas of autism and FASD, or what would you think?

[2:15 p.m.]

J. Charlesworth: I would say there’s a real risk if we get driven by diagnoses, which is one of the most important considerations in going forward here. We should be taking a look at the special needs, the spectrum of special needs. There’s a broad array. To focus on certain diagnoses means there will be lots of kids left out, including kids with FASD, because in order to get a diagnosis, there are certain criteria, and they might be precluded from getting a diagnosis.

I think the push towards thinking about a different way of delivering services or assessing need or assessing functional capacity…. Therefore, when you’re thinking about functional capacity, it’s like: “Oh, well then, this is where the child is now” and “Where are we trying to get the child to, or what is it that we’re looking forward to in terms of their developmental capacity?” So I would caution you against focusing on specific diagnoses and thinking about CYSN writ large.

To your point around money, of course you can throw money at it. But let’s remember that there’s a lot of money in there right now, and it’s been developed, as Christine and Emily said, as a patchwork quilt. Sometimes it’s important to take a step back and say: “Okay, well, now what do we know?” It’s all good reasons, you know. Autism funding was developed as a result of strong advocacy on behalf of parents and a rising awareness — great. But the problem is that if we continue to throw money in it from a patchwork quilt or focus on diagnoses, then we will miss the broader array of children and youth with special needs.

That would be one comment — the ability to kind of take a step back and say: “Well, what do we know about the broad spectrum of special needs, and where is it that we can create something that actually is developmentally focused towards increasing the opportunity for young people to lead full lives?”

That would be my take on it. Be careful of the diagnoses.

L. Throness: My only question, then, is: if you want to study everything, how do you focus on some things? That’s the difficulty.

J. Charlesworth: Well, I mean, one of the considerations we’ve talked about is things like early identification or assessment. That’s a critical thing. If we know that it’s important to find these children and support the families early on in the developmental pathway, because there are better outcomes if there’s greater intervention at the front end, then maybe that’s a place to start. How do we make sure that we’ve identified young people who have those special needs, those extraordinary or significant needs, as was shared? I think there is a pretty clear definition of CYSN. So something to think about.

The other thing I just wanted to add as a consideration…. It was triggered by a comment that you made earlier, Michelle, in the break, about the access to staff or supports. I think that’s a consideration too.

In this labour market, it’s really hard to recruit into the social sector — into post-secondary education and then, of course, graduates. Sometimes we’ve created these very restrictive areas where, you know, you have to be a behavioural interventionist with so many hours, etc., in order to interact with a child with autism. It’s worthy of considering how do we build a network of supportive people and staff that are able to work with young people. So there is a labour issue, as well, that we’re facing.

N. Simons (Chair): We have some deliberating to do.

I really appreciate this. I’m not sure whether we’ll conclude those discussions today or not. You’ve given us too much to think about. It’s really appreciated.

Let’s take a five-minute recess.

The committee recessed from 2:19 p.m. to 2:32 p.m.

[N. Simons in the chair.]

Special Project Draft Workplan

N. Simons (Chair): We’re welcoming back committee members for the final item on our agenda, which is to discuss our special projects.

Since we’ll be talking about things off the cuff, I think I will entertain a motion to go in camera.

R. Leonard: So moved.

N. Simons (Chair): Thank you, Ronna-Rae.

Motion approved.

The committee continued in camera from 2:32 p.m. to 2:54 p.m.

[N. Simons in the chair.]

N. Simons (Chair): We are back on the air. I really appreciate the discussion we’ve had and thank everybody for their presentations today. I look forward to our next meeting.

With that, I will entertain a motion to adjourn.

The committee adjourned at 2:54 p.m.