The committee met at 8:05 a.m.

[N. Simons in the chair.]

N. Simons (Chair): Good morning, ladies and gentlemen, members of the committee, guests and the Clerk’s office. We’re happy to be here on the traditional territory of the Lkwungen-speaking people.

I’m happy that today we are going to be briefed on some issues that are important to us in our future work as we look at systems of service for people with neurodiverse abilities. I don’t think we have a lot of need for a major introduction here, but it’s nice to see everybody.

I’d like to welcome Danielle and Christine to the committee. We’ll just start right off.

Briefings on Children and Youth
with Neurodiverse Special Needs

MINISTRY OF CHILDREN
AND FAMILY DEVELOPMENT

C. Massey: Thank you. Good morning. Really pleased to be back here in front of the committee. We were here in January providing an introduction to all of MCFD services for children and youth with special needs.

Of course, my name is Christine Massey. I’m the assistant deputy minister for early years and inclusion. This morning I am joined by my colleague Danielle Smith, who is the acting executive director for that area.

Before I go any further, I do want to pause to acknowledge the traditional territory of the Lkwungen-speaking people — and very appreciative to have the opportunity to present on their traditional territory today.

We tried to plan for about 20 to 25 minutes for our presentation. What we’ve done since the last presentation is tried to tailor it to the project’s scope that we’ve been provided, with the focus on neurodiverse children. What Danielle will do is walk you through how families journey through the services, from being identified with a special need through to getting services and transition. We hope that will be a helpful format.

I understand we’ll have opportunity for questions at the end, and of course, we’ll do our best to answer any questions. If there’s anything we didn’t come with today that you were hoping to get from us, we can always follow up.

With that, I’ll turn it over to Danielle.

D. Smith: You’ve been provided the slide deck, so I’ll just note which slide I’m on when I go through.

Thank you for the introduction, Christine, and recognition of the traditional territory.

As Christine sort of noted, it’s my understanding that there’s a desire for the committee to understand further the current assessment and eligibility framework for children and youth with neurodevelopmental special needs.

As the population of neurodevelopmental special needs is very diverse, I focus this presentation on three specific populations. Slide 3. Autism spectrum disorder, fetal alcohol spectrum disorder and intellectual disability are the three focus areas.

I will guide you through the process of how children and youth with a diagnosis of fetal alcohol spectrum disorder, autism spectrum disorder and intellectual disability move through the pathway of supports. We’ll focus understanding on identification, eligibility for services, delivery of services and the transition points. I’ll also explain how our ministry intersects with the other ministries in the service delivery system.

Slide 4, fetal alcohol spectrum disorder. FASD is a highly diverse disability. There is no standard profile of a child with FASD, as the impact of alcohol will vary greatly according to the amount consumed, the timing of consumption, health of the mother and the impact of any adverse environmental influences after birth.

Co-occurring mental health disorders and adverse childhood experiences are common among the population of FASD. The exact prevalence rates of FASD are not known, but the latest research is suggesting that up to 4 percent, or one out of every 25 Canadians, has a diagnosis of FASD.

[8:10 a.m.]

In B.C., data is not available specifically. We know that there are lower rates of diagnosis. Some of the possible reasons for the lower rates of identification and diagnosis may include the complexity of the diagnosis — for example, access in rural and remote locations to clinicians who can complete the diagnosis. Stigma and fear also prevent families from seeking identification.

In 2017-2018, we understand that 216 children and youth had a confirmed diagnosis of FASD, which is far lower than the 4 percent estimated prevalence rate for Canada. Diagnosis requires a specialized assessment by a multidisciplinary team and confirmed maternal drinking during pregnancy. Assessment services are accessed through the Ministry of Health through the complex developmental behavioural conditions clinics operated in health authorities.

Referral for assessment typically requires a referral from a pediatrician. In the Northern Health Authority, referral can be made by a trained general practitioner or a nurse practitioner. Typically a child is not diagnosed before their eighth birthday due to the nature of the psychological testing that’s required.

Eligibility for services. Services available to children and youth and their families with suspected or confirmed FASD include the FASD key worker program. Eligibility for the key worker program does not rely on the confirmed diagnosis. This approach was set up to accommodate families who are reluctant to seek assessment due to the stigma and fear that surrounds it or in cases where parent prenatal alcohol exposure cannot be confirmed.

If the child has an additional diagnosis of intellectual disability, this child and family would also be eligible to access the suite of children and youth with special needs family support services. These are services such as respite, a child and youth care worker, homemaker supports, support of a CYSN social worker — a children and youth with special needs social worker. Without this additional diagnosis, the family and the child will primarily have access to the key worker program and foundational programs such as infant development program, early intervention therapies and supported child development programs. Children may also be eligible for children and youth mental health services to address concurrent mental health challenges.

Delivery of services. The key worker program assists families in understanding how FASD impacts their child and how they respond to the environment. They work with the parents, caregivers, family members and service providers in identifying ways to adapt the child’s environment in response to the child’s needs. The program is delivered through contracted agencies. Many programs report wait-lists for services due to increasing demands. These services are delivered through contracted agencies through the 13 service delivery areas.

Transition points. Upon entry to school, a child with FASD may present with challenging behaviours and will often have great difficulty with peer relationships. FASD is highly variable, and strategies that work for one child may not necessarily work for another. Children with FASD are often mislabelled as wilfully disruptive or poorly motivated when, in fact, they have variable challenges with memory, impulse control, decision-making and planning. These problems can vary day to day and can appear to be under the control of the child.

Most children are not diagnosed, if at all, before the age of eight to 12 years. Therefore, school personnel may be ill-equipped in supporting a child with FASD. Upon diagnosis, school-age children may receive special education designation that enables additional resources to be provided to the school district.

[8:15 a.m.]

Many youth with FASD are at an increased risk for involvement with the youth justice or adult justice system. Having additional mental health challenges is often seen. They do not complete school and are at risk for unemployment and homelessness. As many as 90 percent of youth and adults with FASD have a co-occurring mental health illness — in particular, anxiety and depression and, in some cases, unresolved post-traumatic stress disorder.

Youth with FASD, unless diagnosed with the additional diagnosis of intellectual disability, do not have access to a child and youth with special needs social worker to assist in transition planning for adulthood.

The eligibility parameters to access Community Living B.C. services, CLBC services, require a recent adaptive functioning assessment demonstrating that the youth’s adaptive functioning must be three standard deviations below the mean, which effectively means very, very low adaptive functioning. When this criterion is met, these youth are able to transition to CLBC’s personalized supports initiative. We understand that in 2017-2018, of the 270 youth who qualified for the personalized supports initiative at CLBC, 188 of them had a diagnosis of FASD. So not all of the youth are able to access that program.

I’m going to move on to autism spectrum disorder and identification. Parents typically have concerns about their child’s development before their child’s first birthday. However, many are not identified or assessed for autism spectrum disorder until they reach school age. Entry points to identification typically include families discussing concerns with their family doctor about their child’s development, self-referring to a child development centre, having a conversation with the public health nurse at local health units. A doctor’s visit may result in a referral for a diagnostic assessment.

Publicly funded multidisciplinary assessment services are accessed, through our partner the Ministry of Health, through the B.C. Autism Assessment Network, known as BCAAN. The wait times for publicly funded BCAAN assessments vary from region to region due to the volume of referrals and the population volumes in each region. We understand that as of early January, the provincial median wait time for a BCAAN assessment was around 55 weeks.

Some families choose to expedite the process by purchasing a private assessment, sometimes multiple times. However, due to the cost, not all families are able to pursue private assessments, which leads to inequity in the assessment and identification pathway.

Current data from the autism funding program indicate that approximately one in 45 children and youth aged six to 18 are diagnosed with autism spectrum disorder in B.C., which is an increase from last year, which was one in 52.

Eligibility for services. After receiving a diagnosis of autism spectrum disorder, families connect with the ministry’s child and youth with special needs social worker in order to determine eligibility and apply for autism funding. To be eligible, children and youth must have a confirmed diagnosis of autism spectrum disorder that meets the standards of the B.C. Autism Assessment Network. They must be a resident of B.C., under the age of five or between the ages of six and 18, inclusive.

[8:20 a.m.]

If the child receives a diagnosis outside of the province, the assessment must meet BCAAN standards in order to be eligible for autism funding here in B.C. Families typically have to have a confirmation of diagnosis completed by a qualified specialist in B.C. who will review that assessment and qualify that it meets the B.C. Autism Assessment Network standards. They sign off on that form. That is submitted, and then it’s reviewed for eligibility here.

No reassessment is required once the child has been approved for autism funding. Access to autism funding remains until the child ages out. Funding renews annually, regardless of the child’s needs.

Slide 10. The funding model is an individualized funding model that enables the child’s parent or guardian to manage and have oversight of the services provided to the child, based on their child’s needs. Eligible equipment and services must be approved by the autism funding branch. Families of children age 5 and younger with a diagnosis of autism spectrum disorder receive up to $22,000 annually towards the purchase of equipment and services, while families of children age 6 to 18 with a diagnosis of autism spectrum disorder receive up to $6,000 per year towards eligible equipment and services.

So 16,298 children receive autism funding in B.C., and 86 percent of that number are children ages 6 to 18 years. Families also have access to Autism Information B.C., which is an MCFD-run provincial information centre for autism and related disorders that was established to support families and community members in understanding autism spectrum disorder and navigating the B.C. service system. Also known as AIS BC, it is available to assist all members of the community, professionals as well. Service is not restricted to having only a diagnosis of autism spectrum disorder.

Eligibility for autism funding enables eligibility for the CYSN family support services. It does not limit eligibility for other children and youth special needs services, such as the foundational programs or the At Home program, provided that they meet those program eligibility requirements.

Therapeutic services for children under the age of 6 must be selected from service providers that are listed on the registry of autism service providers. This is known as the RASP. The RASP list is maintained by MCFD to ensure that professionals providing services are qualified to work with children with autism.

Slide 11, looking at the transition points. Children and youth in the autism funding program will face two significant transition points. The first transition point is from early years into the school system, which results in the change in the amount of funding that a child receives from the autism funding. So when a child turns the age of 6, the funding reduces to $6,000 annually.

The change in funding is a result of the supports being directed to the school system. The Ministry of Education provides supplemental funding of $19,400 per year to the school districts, over and above the per-pupil funding, for each child diagnosed with autism spectrum disorder to provide in-school services.

The second major transition point is the transition to adulthood and out of the CYSN services. Families have access to a CYSN social worker, who is available to assist in planning for the transition to adulthood. Services for adults with autism spectrum disorder are available through Community Living B.C., the developmental disabilities and the personalized supports initiative program. However, only adults with significant challenges with day-to-day living, as in adaptive functioning, are eligible for the personalized supports initiative.

[8:25 a.m.]

Individuals must be confirmed as not having a developmental disability and must have a written assessment completed by approved professionals indicating that they have a diagnosis of FASD or autism spectrum disorder, noting significant limitations in adaptive functioning. So it’s a very narrowing population that transitions into CLBC services.

Moving on to intellectual disability. Children diagnosed with intellectual disability, including global developmental delay or an unspecified intellectual disability, may be eligible for the CYSN family support services. There is no specifically publicly funded assessment pathway for children diagnosed with intellectual disabilities like there is with FASD or autism.

Typically, the identification is made through a self-referral to a family doctor, then on to a pediatrician, and then, in many cases, an assessment to a registered psychologist, which the family pays for. Some child development centres across the province have registered psychologists on staff, where children can be linked and referred to. Families will often look to psychologists hired by the local school district to conduct the assessment — so therefore waiting until they enter school.

Eligibility for the suite of family support services requires a child to be under the age of 19, be a resident of B.C. and have a confirmed diagnosis of intellectual disability completed by a B.C. registered psychologist, a registered psychological associate or a certified school psychologist.

The delivery of services. Children with intellectual disabilities and their families are eligible to access the support of a CYSN social worker and the suite of family support services, which includes respite services and support services, which are a range of programs delivered by locally contracted agencies aimed at supporting parents to care for their children and youth with special needs in their homes — for example, access to a child and youth care worker, behaviour supports, parenting skills training, support groups, household management services and life skills supports.

Many of the programs, though, report wait-lists for services due to increasing demands. And in some areas of the province, the same suite of services isn’t necessarily available. It just depends on what supports are available in the community.

If a child with an intellectual disability also has significant physical disabilities that contribute to them being dependent in the areas of daily living such as toileting, eating, bathing and dressing, they may be eligible for MCFD’s At Home program, which supports the family with some of the extra­ordinary costs of caring for a child with physical challenges. A child with a diagnosis of intellectual disability may also be eligible for the infant development program and the supported child development program, as well as early intervention and school-age therapies to support their developmental needs.

Transition points. For this population of eligible children and youth, they have access to a CYSN social worker to support families with planning and implementing transition activities for youth between the ages of 14 and 16 years. This includes assisting the family to identify and connect with key transition supports, supporting the development of a transition planning team and the selection of a planning coordinator.

If the youth is likely eligible for CLBC services, the social worker will be able to assist the family in facilitating a referral to CLBC or to another program called services to adults with development disabilities, which is offered from the Ministry of Social Development and Poverty Reduction. It’s also commonly referred to as STADD. STADD is not available in all communities in B.C. Where it’s not available, the CYSN social worker can assist the family in that youth transition planning.

[8:30 a.m.]

If the youth is also eligible for the At Home program, there is an expedited process that’s made available to apply for persons with disabilities supports, PWD supports, through the Ministry of Social Development and Poverty Reduction. But generally for these youth, the transition point is into CLBC services. If they’re not eligible within that, for those support services, the supports are limited as they transition into adulthood.

C. Massey: Thank you, Danielle. I’m going to move on to slide 15, just to wrap it up.

I don’t know if you recall that when I was here in January, we talked about work that MCFD is initiating to develop what we’re calling a CYSN service framework. For context, a lot of our programs that have been set up to support children and youth with special needs have been in place for 30 years. So we feel that it’s time to just take a step back and look at the entire suite of services and make sure that we are aligned with the best evidence and recent research as well as what families are expecting.

This work is just getting underway. It will happen over the next year or so. The outcome, obviously, is that we will look to align with the latest research and evidence, as I said, but also be able to better explain to parents and families what they can expect from MCFD and why. That would also apply to our service partners, like the Ministries of Health, of Social Development and of Education, so that the pathways to other services are clarified.

One of the first pieces of work that we’re starting with, on the next slide, is a piece of work we think the committee will be interested in, starting with the family journey. We’ve engaged two external research firms — one focused on Indigenous families and one on non-Indigenous families — to map the journey of families entering and receiving MCFD services, inclusive of transitioning out of services. They’ll also be collecting data for us on assessments and diagnostic procedures, the costs to families and any other key consi­derations that affect a family’s choices as they select services along their journey.

This group won’t be making any recommendations, but we anticipate having a lot of rich information, particularly about family experience. We anticipate this research will be finished later this spring, and we’re happy to share the results of that research with this committee once it’s available.

That concludes our formal comments this morning. We’re happy to take questions.

N. Simons (Chair): Well, thank you very much for those presentations. I know my fellow committee members will have some questions. We’ve got a whole list.

R. Singh: Thank you so much for the presentation. I’m very glad that you talked about doing the review and doing that study. That’s what I’m hearing from a lot of people, especially the kids of school age — the gaps that are happening. We discussed that in our January meeting also.

One of the things that is also coming up is…. Yes, the school gets the funding. But what about when the school is not in session — like in the two-week spring break and the two months of the summer break? When the school is not there and that kind of assistance, that’s when people fall through the cracks. They just have the $6,000 funding, which they are using for a number of things. They talked about the camps, and those camps are so expensive, and there are not many camps that cater to the kids that have special needs.

Is that also something that you are looking at?

C. Massey: I expect that that will come out through the family research, in terms of where they’re having struggles accessing services. So gaps around the school year — I expect that will come.

Danielle, is that something that we’ve heard through your experience as well?

D. Smith: Yeah, absolutely, we’ve heard that. Certainly, one of the pieces of information that I’ve heard regularly from families is with that transition into the school system and the transition of that level of control over to the school district now, making choices on how those resources will be…. It’s a significant challenge for many families.

R. Singh: Absolutely.

[8:35 a.m.]

D. Smith: We’re hopeful to hear more through the research, assuming that it’s probably going to confirm what we know.

M. Stilwell (Deputy Chair): Thank you for the presentation. Maybe just a comment on that first. Then I have two questions: one on FASD and one on autism.

Is there a list of services or community supports that is available to those parents — that they know what else is available for those support weeks? I know that in Parksville-Qualicum, our rec department provides inclusion at the different spring programs. I mean, there’s a limit to how many days you can go or how many hours you can get one-to-one support.

How are we informing parents so that they know that it is offered in the community or that it’s available to them?

C. Massey: Is that mostly AIS BC or something — community service providers, like Autism B.C.?

D. Smith: That’s right. Families can access information through AIS BC as well as through their CYSN social worker. If they have a relationship and a connection with the social worker, the social worker can inform. But it is parents seeking out the information, rather than….

M. Stilwell (Deputy Chair): Yeah. I think that’s often one of our gaps, that it’s the parent who has to seek out the information. They don’t even know what they’re looking for or that it could be a possibility that there is something in their community. I think there is a disconnect there, and we need to do a better job of bringing it to the parent and notifying the parents of what supports are available in their community.

My question on FASD…. You spoke about 270 FASD individuals who were applying for services, 188 who received it, and that that leaves 82 people without access. So what is available to them? Are they just kind of dropped at that point? How are they then transitioning into adulthood?

D. Smith: That full 270 were eligible for personalized supports initiatives. None of them were dropped. It was just that 188 actually had a diagnosis of FASD. That entire eligibility population didn’t have FASD necessarily. I was just trying to frame that not everybody….

To the question regarding what happens for those youth that don’t transition, necessarily, there aren’t a lot of services. It’s a real limitation.

M. Stilwell (Deputy Chair): Then the question on autism was on slide 8. You recognize that some families choose to access private assessments. But then you also mention that sometimes they go for multiple assessments. I thought maybe you could expand on that. Is that because they are seeking the diagnosis they want, so that they can access the funding that they feel they need and deserve? Are there any statistics on how many are getting those multiple assessments to get the answer that they want?

D. Smith: We don’t have any data on the frequency in which some of the families…. What we understand is that yes, some families really believe the diagnosis of autism is what their children have, so they pursue multiple assessments. But we don’t necessarily have data on that component.

C. Massey: I think some of the family research may bring some of that to the forefront. I think it’s interesting. I’ve heard families say that they don’t want the stigma of a diagnosis assigned to their child, but others do want the supports that come with the diagnosis. So they do seek it out. I’ve heard about both sides of that.

M. Stilwell (Deputy Chair): With the acknowledgment that you need to be a B.C. resident and you need to have the diagnosis in order to receive the funding, when someone is moving from out of province…. We’ll say Ontario, because it’s in the limelight right now. If people from Ontario aren’t happy currently with the changes that that government has made, if they were to come to British Columbia, do they bring that diagnosis with them? Do they automatically get the funding when they move to British Columbia? Is there a wait period before they become true residents of British Columbia, before they can receive that funding?

C. Massey: There’s a requirement that their diagnosis get confirmed, that it’s done to the same standards to the diag­nosis in B.C.

[8:40 a.m.]

D. Smith: The B.C. Autism Assessment Network stan­dards include two specific diagnostic tools, which are known as the ADOS and the ADI-R. Those need to be completed in order to be eligible in B.C.

Basically, families coming from another province would bring their assessment with them. It doesn’t automatically allow them to be eligible. There’s a confirmation-of-diagnosis form that the families need to have completed by a recognized, certified specialist here in B.C. who would then review the assessment and confirm that it meets the B.C. Autism Assessment Network standards. Then they make a decision and sign off on whether it is acceptable. The families would then pursue an application for autism funding after they have that confirmation of diagnosis.

N. Simons (Chair): Michelle, you’ve got another question — bonus offer.

M. Stilwell (Deputy Chair): Just one final…. So we don’t have to back up.

Those individuals who are going for the private assessments, once they get the diagnosis, how does that impact the wait-list for families who are waiting the 54 weeks to get the general assessment? Does that then bring the private assessment families into funding sooner?

N. Simons (Chair): For the record, the answer was yes.

R. Glumac: I appreciate you going through and listing all of these things and that you’re going to be doing research on family journeys. I guess what I would like to see is….

What is the ideal family journey, kind of thing? Their journey is going to be like, “Oh, what do I do?” — just a journey of discovery. So obviously, their challenges are going to be trying to figure out how to navigate through everything. To have a template of, “Here’s the ideal journey for a family,” and maybe work with people that are early on in their journeys, to help them through that journey…. It’s providing information in a place that’s easily accessible, as was mentioned.

I don’t know that looking at just all of the experiences that people are having…. Aren’t we able to express what all of the points are — where families need to go, what services are available, how they get there? Aren’t we able to express that, rather than asking families to share with us how they journeyed through it? Isn’t there some way we can take more of an active role in identifying what the best journey is? In doing that, wouldn’t we then also see: “Oh, there’s a gap here” or “This process takes too long” or “There aren’t enough resources here”? Aren’t we able to do that?

C. Massey: I agree with you. I think we could very easily establish a set of principles, for instance, that every family journey should abide by. There are no obstacles, or the information is clear. I don’t think we want to make any assumptions about what family experiences are. We’ve all heard some anecdotal stories. We are relying on the research to document that for us, to make sure we aren’t making any assumptions.

The other piece we are hoping to find out from the family information is really drilling down to every specific program. What are the specific bumps, specific to different programs that they have access to? They’re all a bit different. They all have different eligibility requirements, different funding levels. So some of the observations we get from parents specific to one particular program will be different.

I also want to recognize that every family is different. Our goal is to make the family journey as easy as possible while being as flexible as possible to recognize the particularities and unique circumstances of each family. So that’s the balance we’re always striving for.

[8:45 a.m.]

R. Glumac: I understand that everyone’s journey is different and that everyone has different experiences. At the end of the day, there’s a diagnosis that happens, and there are services that are available. I mean, you said that maybe we could have a set of principles or something to guide people or to try to achieve. I don’t know. I come from more of a logical, sort of software background. I would imagine a tree of steps that a family goes through.

Step No. 1 — what is it? I don’t even know. You go to your doctor, and they refer you to this. Then that journey takes 55 weeks or whatever. Then it connects to this person. Then you go for a diagnosis. If you receive a diagnosis, you have eligibility for these services. If you receive a different diagnosis, you have eligibility for these services. Just map it out. This is the journey. This is the journey for every family that they can take. That would be much clearer to me, if we had something like that.

Could we express things in that way so that people can look at this and see what the next step is ahead of them, without having to try to discover that on their own?

C. Massey: I completely agree. That’s part of the goal of the CYSN service framework that we’re working on. One of the things we want to come out at the other end is a clear way to describe to parents what the pathways are and what they can expect from MCFD services.

L. Throness: Just a few quick questions. You had mentioned the numbers of children that are diagnosed with FASD and autism but not intellectual disability. How many of those children are there in B.C.?

D. Smith: We don’t have specific data on that at this time.

L. Throness: Okay. I was surprised to see how low the diagnosis was for FASD and surprised and a bit alarmed to see how high autism is. For all of these three things, the diagnosis is sort of unclear. You know when a person has a broken leg. You know precisely when they have it and just how bad it is. But it seems that the diagnosis is far less clear with respect to all three of these categories.

I note that the incidence and the demand for services is increasing. Does this reflect a change in the criteria and the way we diagnose people, or does this really reflect an increasing incidence of illness in our population? Should we be concerned with…? Are there more and more children with intellectual disabilities, or is there some other factor that’s at play here?

C. Massey: I can speak a little bit to autism spectrum disorder, and I’ll let Danielle speak to the others.

Certainly with autism spectrum disorder, that’s been a lively debate. Are we seeing increasing prevalence in the population or better identification of what’s always been there in the population? The research seems to be better identification.

The criteria for autism spectrum disorder, through the diagnostic criteria that are available — through the DSM, as it’s called — are just getting more and more precise, and the tools are getting better for diagnosis.

D. Smith: I would echo the same thing with the other diagnoses.

The challenge with FASD…. As I said, there are some suggested issues with families wanting to have that diagnosis sought out, with fears around potential involvement of child protection services or the stigma that surrounds it. That really influences a family’s desire to seek the diagnosis that comes with that.

For intellectual disability, anecdotally we know that the prevalence isn’t…. It’s been pretty static for many years. What is shifting, though, is just perhaps the complexity or concurrent mental health conditions that are associated with some of those diagnoses.

L. Throness: In my experience, in a large organization, there are programs that are scattered throughout the organization. Are there programs…? For instance, the key worker program serves 216 children across B.C. That’s not very many. Are there programs like that that are underutilized and underused in B.C.?

[8:50 a.m.]

D. Smith: Can I just clarify? They serve more than 216. Those were the number of children that were eligible for the personalized supports initiative.

For the FASD program, their key worker program, they’re distributed across the 13…. It’s across the province in 13 service delivery areas. We don’t necessarily have data on the numbers of families that are accessing that program. We do know anecdotally that there are wait times to access that program.

C. Massey: I would say the reports we have from the agencies that deliver services for children with special needs is that they see demand increasing, complexity increasing and some of the wait times increasing as well. But again, we don’t have robust data on wait times.

R. Leonard: Thank you for your presentation. You began speaking about the lack of data, because you just don’t have the numbers. You’re doing this research around people who are already identified, in a sense.

My question is…. We’re talking about stigma. When a child is born, they have an Apgar score test. There are certain things that are automatically done. If we had a system in place where it was an automatic screening for whatever deficiencies that we’re looking at to be able to start to address, will that not help get rid of stigma and help identify earlier on so that we don’t end up with children at the age of 18 not quite making the grade for CLBC and then struggling for the rest of their lives?

I’m just wondering if that is something that you’ve looked at, in terms of taking the bull by the horns and not expecting families to…. I have personal experience with a family member, where I certainly questioned that there should have been a diagnosis, and it was a tragic end.

C. Massey: We haven’t considered or looked closely at a program of automatic screenings, say for every child, which I think is what you’re suggesting. Happy to take that away and look at it. Right now the system largely does depend on parents seeing concerns with their child’s development and bringing that to a family physician or another community agency like a child development centre.

N. Simons (Chair): We’ll go to Ellis.

E. Ross: Thank you, Mr. Chair. Sorry for being late today.

First Nations populations with FASD — it’s a very sensi­tive topic. I just want to know: is it getting worse, is it getting better, or is it staying the same? Is it fairly easy or difficult to distinguish the difference between FASD versus ID?

D. Smith: We’re not able to determine if the prevalence rate is improving or not in First Nations communities or Indigenous populations, because of the other issues that I spoke to earlier, in terms of fear and stigma.

In terms of it being distinguishable…. It’s a very complex assessment that is undertaken, a multidisciplinary assessment that is undertaken, to diagnose FASD. There are specific criteria that need to be met, in addition to confirmation of maternal alcohol use. Because of those factors, it is quite distinguishable from intellectual disability.

Intellectual disability is largely looking at cognitive functioning, intelligence functioning, and certainly that may be a component that a child is experiencing that may also have a diagnosis of FASD. But they are fairly distinguishable diag­noses.

E. Ross: Just based on pure numbers, then, would you say that the issue is stable, getting worse or getting better? I understand the unreported cases, and I understand why. But just on pure numbers, in terms of the services you’re already delivering, has that number remained stable, or is it increasing, decreasing, over the last five, ten years or so?

[8:55 a.m.]

D. Smith: Again, it would be really hard to predict, because there are families waiting to access. Again, we don’t necessarily have robust enough data to perfectly identify whether or not it’s improving.

Just recently, this last year, the national statistic of around 4 percent, or one in 25 Canadians, was released — as being diagnosed as FASD. But there were a series of caveats according to that because of the variables that come into play in terms of access to assessment, fear, stigma — all of those components as well. Very hard to definitively say.

C. Massey: I will add that the ministry is part of a partnership in the northwest of Canada, with other provinces, to support research into FASD, recognizing that the lack of data is an issue across the western provinces. We contribute financially to a research network that aims to improve our data, diagnostic criteria and knowledge about effective services.

N. Simons (Chair): If I may follow up on that. There have been programs in the past that have been preventative programs — preventative information campaigns to alert families about the potential dangers of drinking during pregnancies. I’m wondering if there are any current programs of prevention or awareness being conducted or operated by the province.

C. Massey: Those tend to be led by the Ministry of Health through their public health services. What I’ll do is I’ll flag that for…. I know the Ministry of Health is coming later this week, and we’ll make sure they bring that information. Unless Danielle is aware of anything right now. Okay.

N. Simons (Chair): I’d like to thank you both for your presentations this morning. They were very informative. If we have any further questions, we’ll make sure we send them to you. With that, I’ll thank you very much.

We’ll just take a three-minute recess.

The committee recessed from 8:57 a.m. to 9:02 a.m.

[N. Simons in the chair.]

N. Simons (Chair): Thank you very much, Members. We are back on the air and continuing the meeting of the Standing Committee on Children and Youth. Following the presentation from the ministry, we have the Representative for Children and Youth, Jennifer, here with Alan.

Thank you both for coming. I appreciate this opportunity to hear from you about our topic of interest today.

With that, let’s just get….

Interjection.

N. Simons (Chair): Yeah, Dawn is here too — oh, right — and Blair. Look at that. I was looking straight ahead only.

Thank you all for being here.

Thank you, Jennifer. Go ahead.

OFFICE OF THE REPRESENTATIVE
FOR CHILDREN AND YOUTH

J. Charlesworth: Great, thank you very much. Good morning.

I appreciate the opportunity to come back before you today to discuss the committee’s special project on assessment and eligibility of services for children and youth with neurodiverse special needs.

As a way of beginning, I want to acknowledge the territories of the Lkwungen-speaking peoples. One of the things that I love is to learn more about what has transpired in these territories. It’s known as the place to smoke herring, which is particularly timely given the time of year that we’re in.

Before I get started, also, I’d like to introduce the staff members who are here with me today: Deputy Representative Alan Markwart; Deputy Representative Dawn Thomas; Blair Mitchell, who’s the RCY’s executive director of advo­cacy and youth engagement. Also with me is Linda Hughes, who’s the ED of monitoring and research; Carly Hyman, the chief investigator; and Jeff Rud, our ED of communications. So you have got the full meal deal today.

I’d also like to mention that both Alan and Dawn are adoptive parents of young people and adults with special needs. They bring to this conversation unique lived experience as parents.

All of us are here today to provide any information and assistance you need. I’ll begin with my remarks, and then we’ll go from there.

As stated in our most recent appearance before you in January, from our perspective, the challenges B.C. families experience with CYSN services can be broadly placed into three general categories: the assessment and eligibility for services, access to services, and case coordination and the challenge of system silos. Given the written requests we received from the committee, we’ll focus our attention this morning on the first two, but we’re happy to discuss any aspect.

[9:05 a.m.]

We’d also like to bring examples from our advocacy files to illustrate the lived experience of families and young people that are attempting to gather and access CYSN services. I also found it interesting that you asked about the ideal family journey, so we’re happy to speak to that as well.

Now, to provide a visual guide, staff in our monitoring program area have produced a set of pathway graphics for your reference. These portray the pathways to assessment, diagnosis and services for children suspected to have autism spectrum disorder, fetal alcohol syndrome disorder, global developmental delay and intellectual disability.

If you’re like me, when you first take a look at this, you go: “Oh. Surely we can simplify this.” They’re not exactly straightforward pathways, and there are a number of places where children and families can get hung up waiting for assessment, diagnosis and services, and there are a number of dead-ends, as you will experience.

I appreciate and applaud MCFD’s recognition that CYSN’s services have evolved in bits and pieces over time and over many years, and it is timely that they are reconsidering and taking a closer look at the services.

One of the things with these pathways is you’ll notice they begin with a green box that is titled “Identification of concern.” This is very important, especially when one considers that there’s limited developmental monitoring in B.C. A fulsome and systemic process of ongoing developmental monitoring through the early years is not expressly mandated in this province — to your point, Ronna-Rae — even though it is recommended by the Canadian Paediatric Society.

In B.C., family physicians are recommended to conduct wellness checks through an infant’s first year and then yearly after that. Ultimately, whether these checks are conducted depends on a number of factors: whether a family has a physician; whether the physician’s caseload allows the time for doing the wellness checks; and whether the physician has the adequate knowledge and understanding of how best to do that and what to be looking for.

Parental recognition is often a key to how soon a child is placed on a pathway to receiving timely assessment, diagnoses and services. That means a great deal is dependent upon the parent’s knowledge of typical and atypical child development, as well as the parent’s ability to express those concerns and access a physician or a qualified professional.

In addition to the limited developmental monitoring conducted in B.C. for infants and young children, there are no universal touch points for children between the ages of 18 months and five years, or school entry. So public health nurses conduct developmental screening at vaccination appointments, which take place up to 18 months of age, and then again at five years old, provided that parents schedule these appointments. But no health professional is mandated in B.C. to meet regularly with children and families between the ages of 18 months and five years.

As you can appreciate from our prior conversations and this conversation this morning, that’s a very critical developmental time. If a parent, for example, doesn’t have regular access to a family physician, a developmental issue may well go undetected until much later. In cases where a parent does express concerns regarding the development of their child, a referral from a medical practitioner is required in order to obtain further assessment.

In the case of Charlie, the boy that was the subject of our Alone and Afraid report released in December, a physician at a walk-in clinic had some doubts, had some questions and concerns about his atypical development at age one, but our investigators found no indication that an assessment was undertaken or if a referral was made. Charlie’s case is a prime example of where an earlier assessment might have prompted earlier interventions that could have changed his life trajectory.

I’m going to move on to assessment and eligibility. As has been suggested, there are two types of developmental assessments used to determine services provided by MCFD’s CYSN program. A functional assessment is an evaluation of functioning across a number of domains by a designated professional. This type of assessment is required to determine eligibility for some CYSN programs.

At Home medical and respite benefits require a functional assessment, for example. Those who are deemed eligible for At Home benefits are also eligible for family support services.

Functional assessment results are evaluated by CYSN service providers who determine whether assessment squares qualify a child or a youth for services. In Charlie’s case, we found that the assessment tool that was used was subjective, not based upon observation of functioning — it was based on parental information — and resulted in scores that were inconsistent with and did not account for his family’s situation. This included their capacity to manage Charlie’s significant needs and additional costs while living in poverty, facing housing instability and significant other challenges.

[9:10 a.m.]

In some cases, we’ve observed that eligibility decisions based on functional assessments appear arbitrary and may be too restrictive and vary across regions. For example, MCFD’s At Home program provides medical benefits and respite benefits to eligible families, but eligibility for those benefits is determined by a functional assessment of a child’s dependence on others to manage daily living in four areas: eating, dressing, toileting and washing.

Children who are fully dependent in three of those four areas, as Charlie was in his first assessment, are eligible for a choice between medical and respite benefits. Children assessed in all four areas of dependence, as Charlie was in his subsequent assessment, are eligible for both medical and respite benefits.

In our view, these eligibility requirements are unnecessarily restrictive. It’s unclear, for example, why children who are partially dependent in these areas of daily living are ineligible for such benefits or why children who are fully dependent in three or four do not quality for both medical and respite benefits. Yes, there are some monetary considerations there, but when you think of the opportunities for families to get the supports and services they need and to stabilize the family and support that child’s development, it’s important to consider how best to provide those interventions and supports.

Further to this, asking parents of children with complex needs to choose between medical benefits and respite benefits seems to be unfair and, quite simply, does not meet the needs of the child and parents in many cases. Faced with that choice, as we discussed before, parents choose medical benefits because their children need supplies such as walkers or standing frames, toiletry aids, beds, crutches, therapy equipment, etc.

Another reason that medical benefits are chosen is that there remain significant wait-lists for respite. So if you are looking at the cost-benefit analysis, if you will, for a family, they’re going to choose the thing that is immediately accessible, as compared to something that may take many years to access.

With relation to eligibility for respite services, it should be noted that the assessment criteria is entirely based on physical dependencies and does not consider, for example, the fatigue and emotional toll on parents, who can be faced with the daily challenges of significant behaviour management issues.

That’s the functional assessment. The other type of assessment that’s been alluded to with the MCFD presentation is the diagnostic assessment, involving standardized testing by registered diagnosticians. Diagnostic assessments for autism spectrum disorder, fetal alcohol syndrome disorder, intellectual disability and global developmental delay are required to determine eligibility for some CYSN services.

These assessments, as has been pointed out, are funded through the health system, rather than MCFD. Even after a diagnostic assessment is recommended by a physician, there are usually long wait-lists to have that assessment conducted. Wait times for assessment for ASD and complex developmental behavioural conditions can be more than one year. Services are typically not offered during this time that a 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.

In Charlie’s case, at the age of four, when he was referred for assessment, he would have been eligible for under-six autism supports of $22,000 a year. By the time his assessment had been undertaken 19 months later, he had turned six and was eligible for $6,000 per year in over-six funding. Had a referral and follow-up been made when he was seen at the walk-in clinic at age one, apropos of the non-stigmatizing developmental monitoring, there could have been even greater opportunities for earlier assessment funding and intervention.

I’m going to share a case example to illustrate this. This comes from our advocacy team. At the age of four, a couple began to suspect that their child had autism spectrum disorder, but they didn’t have the means to pay for a private assessment. Therefore, his family waited 13 months for an assessment through the public system.

In this case, the child received one year of autism funding at $22,000 before turning six. Had the family been able to afford the private assessment, however, they would have received close to two years of funding at that level. The end result is that because of the wait time for assessment, this child received considerably less funding for intensive therapy at a critical developmental period.

[9:15 a.m.]

I’m going to talk now about access to CYSN programs and services. In addition to wait times for assessments, access to CYSN services and programs can also be limited due to long wait-lists. Danielle spoke, for example, of some of the wait-lists that are being reported by the contract service providers. For example, during our Alone and Afraid investigation, our investigators learned that in some regions, families can wait five years before receiving direct-funded respite benefits under the At Home program. Despite having a child with significant, complex needs, Charlie’s mom was never able to access those respite benefits.

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 those medically necessary supplies. Poverty may prevent a family from getting to and from services and programs, and housing instability may disrupt services if families move between service delivery areas and must change service providers.

I’m now going to turn attention to FASD. A key shortfall in the system identified by our advocates involves children and youth with FASD. These children 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.

When we look at the CYSN budgetary allocations in the 2018-19 fiscal year, we see a stark contrast, with FASD services receiving $5.8 million annually compared to $81.7 million annually for autism funding, which is also complemented by family support services funding. When I offer this comparison, I am not pitting autism spectrum disorder against FASD. What I’m trying to impress upon this gathering is that autism funding is widely considered to be inadequate as it is when compared to the actual needs of children and youth in B.C., yet funding to help children with neuro­developmental special needs — FASD, a prime example — is minuscule by comparison. This is something we encourage you to consider going forward.

Another case example from our advocates of what parents and their children with FASD have experienced: a couple adopted a girl when she was an infant, but she was not diagnosed with FASD until the age of 13. Prior to that, her parents were unaware of the strategies to use with her, as they believed for several years that her issues were behavioural. This delay in assessment and diagnosis took a toll on their relationship and resulted in the girl going into care under a voluntary care agreement at 18 after she began using drugs and alcohol and her behaviours in the home escalated to violence.

The same girl had undergone an adaptive functioning assessment at age 16 but didn’t meet CLBC criteria, mainly because her parents had been so supportive of the child. At age 19, she was set to go from this voluntary care agreement, living in a supported, staffed resource, to complete independence, with no CLBC support and a fractured relationship with her supportive family.

Fortunately, she underwent a second adaptive functioning assessment at 18½, and this time she met the criteria for CLBC. That speaks to the inconsistencies of the assessments, the efficacy of them. Our advocate believes that the result of the second assessment changed because she had deteriorated significantly without the structure and routine her parents had created for her.

It carries on. The girl transitioned out of care with no­where to live, as CLBC did not have a home share that fit for a child with FASD engaging in drug use who also wanted independence.

She accessed a rental subsidy through an addictions services agency that enabled her to access some shared accommodation, but because of her beha­vioural challenges and difficulty in navigating relationships, it broke down after a short period of time. She couch-surfed for a number of months before accessing treatment, and CLBC was finally able to secure a home share when she was 20.

This example shows how delay in assessment and diagnosis in those early years of FASD can result in long-term impacts, downstream impacts and a lack of services and supports later on, with serious consequences. It also shows problems with functional assessments and how results can differ dramatically when a child’s or youth’s environment changes, and in how it shows that this family and this girl had to hit near-crisis before they received the help that they needed.

[9:20 a.m.]

In general, when it comes to children with FASD, parents, extended family, caregivers and adoptive parents all face barriers when trying to obtain appropriate services and supports. This becomes particularly acute in the teenage years, when our advocates see, time and again, adoption placements breaking down, placements with grandparents or extended family members breaking down and children ending up in care and cycling through placement after placement.

We’ve long believed that these children require supports that they are not getting. We’re starting to take a deeper look into this. RCY’s monitoring team, led by Linda Hughes, is currently working on a research project examining the lived experience of a number of children and youth and their families, children and youth with FASD and their families in the current system.

Central to this research is a concern that, currently, there’s no clear pathway to an accessible and adequate array of services for children and youth living with FASD. Our research will identify and assess the current provincial-level supports, including diagnostic services, assessments and the key worker and parent support program that’s been referred to.

Currently there’s little research that includes the voices of those living with FASD. This research project will place those with lived expertise at the centre of program and policy analysis. We’re looking forward to that and bringing that to this committee in this future.

Now, we’ve focused on ASD and FASD so far but now want to turn our attention to those cases that don’t fit systems criteria. Our advocates also report seeing a number of cases where the complex special needs of a child don’t fit established eligibility criteria for services and supports, resulting in families in great need going unsupported or under-supported.

For example, one of our advocacy cases involves a teen who was diagnosed at Sunny Hill with…. There’s a long list: a complex neurodevelopment disorder, generalized anxiety disorder, ADHD, learning disabilities and disruptive behaviour disorder — five. But because she had no diagnosis of intellectual disability or autism, she was therefore not eligible for CYSN supports. As a result of a lack of support, the child’s adoptive home placement broke down. The 15-year-old is now in care on a continuing custody order.

Then there’s our advocacy case involving two siblings diagnosed with complex neurodevelopmental delays, sensory processing disorder, working memory issues, oppositional defiance disorder, generalized anxiety disorder, Tourette’s and PTSD. That’s seven. But because they don’t have an intellectual disability, FASD or autism, they don’t meet the criteria for CYSN or key worker program.

They’ve also been exposed to domestic violence. They’ve been violent towards their mother, who’s their primary caregiver, and police have been called on multiple occasions to attempt to intervene.

Because these children did not fit criteria for CYSN services, they were offered no supports other than counselling. Eventually, through strong advocacy on the part of their mom, behavioural supports were funded through a section 5 CFCS Act agreement for one child who was engaging in the most violence. But even this service is expected to expire soon. As you can see, we have significant concerns about those children who don’t fit neatly into a diagnosis that is currently supported but who certainly have a plethora of other diagnoses.

I want to turn attention to vulnerability at certain transition points. I appreciate the comments made by MCFD on those important transition points, because it is very critical. The key transition points, as have been mentioned, are when children enter to the school system, but also when they go from elementary to middle school, middle school to high school and, of course, turn 19. A major issue associated with school change is that the support people involved in a child’s life often change as well, which can have a huge impact on their school experience and ability to learn.

Increasingly, and this perhaps speaks to an extension of a comment made earlier, we’re also hearing of children with special needs being excluded from school because schools are not staffed sufficiently to meet their special needs. This can take different forms, with children being asked to come late to school or leave early or reduce the number of days per week that they attend. Parents are often called midday to come and retrieve their children. This places great strain on families, especially single parents who rely on their children being in school in order to sustain their work.

[9:25 a.m.]

The long-term impact on children being excluded from school is significant, as increased absences point to isolation, increased mental health issues, increase rates of substance use and self-harm and, later, challenges with gaining meaningful employment and, as has been mentioned, higher likelihood of involvement in criminality.

One of the transition points which creates the most issues with respect to advocacy cases is the transition from receiving CYSN services through MCFD to receiving services from CLBC after youth with special needs turns 19.

Another advocacy case to illustrate. This is of a young woman who will be transitioning very shortly. She currently lives with her mom and has complex needs. Previously her mom signed a special needs agreement, and the daughter lived at a staffed resource, but she pulled her daughter from this resource after less than five months.

During the past year, the mom has requested that MCFD find another resource for her daughter, but the ministry has not been able to find anything. In the meantime, CYSN has provided one-to-one support for the girl between 8 a.m. and 8 p.m. every day, Monday to Friday, with 48 hours of respite every second weekend and one-to-one support for 12 hours a day on other weekends. Mother and daughter have also had access to a behavioural consultant through CYSN. So a very intensive array of services.

When planning with CLBC began for her transition, there was miscommunication between CLBC and MCFD — we often hear of that — about whether or not the girl was in continuing care. She isn’t. The mother, who is overwhelmed, is seeking a staffed resource for her daughter, but CLBC cannot guarantee such a resource without in-care status. If a resource can’t be secured right away, the mother is asking CLBC to provide a similar level of services as the family is currently receiving through CYSN.

So where it stands? A staffed resource hasn’t been identified with CLBC. It’s waiting on a vacancy, with no indication of when an opening may occur. CLBC is only guaranteeing 17½ hours of community inclusion, beginning on the child’s 19th birthday, per week. All other requests by the family are awaiting approval, and nothing can be confirmed. Can you imagine the anxiety that that’s provoking in that family?

That behavioural consultant currently provided through MCFD can’t continue to follow this girl through to adulthood unless her mom chooses to pay for the service out of the community inclusion funding or another stream of approved funding through CLBC. The family will have access to a new behavioural consultant through CLBC which will be a one-time service, not ongoing as has been provided through MCFD. The bottom line is that the level of service provided through CLBC will only be a fraction of what is currently being provided through MCFD based on an arbitrary age of 19. With the level of service CLBC is suggesting at this time, the mom is predicting a crisis, understandably.

I think the final point is let’s speak to the skills and capacities of caregivers. Clearly, there are many parents, as with this mom, who are trying extremely hard to do the best they can to raise their children. Gaining access to services and coordinating those services can be like a full-time job for parents of children with special needs. Vulnerabilities — including a parent being on their own, facing poverty, struggling with their own mental illness or substance use — may prevent a family from being able to navigate this complexity.

For example, Charlie’s mom never accessed the $6,000 a year in direct autism funding for which Charlie was eventually eligible, following his diagnosis, because it was simply too complex. Take a look at the pathways. This is not an isolated case, and there are other children in B.C. eligible for autism funding for which it’s not being used. This is likely due to the tasks associated with that funding, including filling out the forms, finding service providers, determining whether those providers meet CYSN qualifications and contracting, scheduling and retaining those services.

Direct funding requires the parent to be responsible for employee-to-employee responsibilities, often a task that is very daunting and confusing. Anecdotal evidence also suggests that access to CYSN services and supports may be limited to parents and family members who do not have the knowledge or capacity to actively advocate for their children with special needs.

In consultation with their multidisciplinary team for Alone and Afraid, researchers and parent advocates revealed that it’s often necessary for families to advocate for CYSN services and supports for which their children should be automatically eligible.

We believe that some assessment of capacity of caregivers is required — not in a sense of making judgment, of course, but rather to be able to understand the context in which these caregivers are trying to help their children and their ability to navigate the system.

[9:30 a.m.]

This would take us into the conversation on case management in the silos, which we’ll set for another time or through the questions.

Such assessment could be used to provide more appropriate parental or familiar supports. One of those supports could be a case manager, something we recommended in our Alone and Afraid report, because a common theme we are seeing is parents simply burning out, becoming too exhausted from the day-to-day responsibilities of caring for a child with special needs. To also function as a high-level advocate, case coordinator, to guide their child through what is a very complex system is a tremendous amount to ask.

A couple of final comments. Other things our advocates are hearing. Often caregivers and families know what they need, but the system only offers certain kinds of supports to them. For example, a parent of a child with FASD may need practical, in-home organizing support of their bills and weekly routines. But the system offers them parenting classes outside of the home that will not help what they are facing as a parent in a practical way.

Families that are in crisis often feel judged by the system in that the system is a threat to their family being able to remain intact. Danielle spoke to the fear that is often associated with asking for help, as well, particularly if your child may have an FASD diagnosis.

Receiving in-home supports, such as behavioural support or an interventionist, can be beneficial, but the providers are often so underpaid that families deal with a lot of staff turnover and children constantly having to form new relationships.

Finally, in general, it’s important for the system to take a strengths-based approach to working with families and not one that is deficit-based.

In conclusion, obviously this is a complex issue, and I applaud you for taking this on. This is an important special project. I’ll end my presentation here and welcome any comments and questions from the members.

N. Simons (Chair): Thank you, Jennifer. I really appreciate that presentation. It’s going to really help us with our future deliberations.

I open the floor to questions. Members, do you have any follow-up questions?

Laurie, it looks like you have a lot.

L. Throness: The presentation was a bit dizzying, I must confess.

Is there a place or is there, in the system, something similar to an electronic health record that would follow a child and that would be accessible by various providers so that everybody would know what the child has had and might access?

J. Charlesworth: No. The simple answer is no. There isn’t anything like that, but it’s a very interesting idea. Certainly, we do hear the challenges that parents and young people say of having to tell their story over and over and over again — and the inconsistencies in assessments and diagnoses and not being able to have that tracked over time.

It’s an important point of: how is it that information gets shared over the life of a child and young adult?

L. Throness: The other question, which is a companion question — and I think I know the answer to this — would be: is there one person that follows a child, other than the parent, throughout the system?

J. Charlesworth: You know the answer to this one: no. Interesting you raised that because, as you know from the Alone and Afraid report, we felt that there was some real value in identifying a navigator that stays with the child through the array of services that they might access through their developmental pathway.

So no, there isn’t, but it’s an important idea to consider, for sure.

N. Simons (Chair): Thanks, Laurie. Good questions.

Any other members with questions? We have ten minutes.

Rick, you look like you’re about to ask one.

R. Glumac: It’s amazing how you can predict these things. You’re a very good Chair.

I guess I really appreciate this….

J. Charlesworth: I knew you would.

R. Glumac: It’s wonderful to see everything laid out like this. As complex as it is, I think it could even be more complex in terms of…. You know, you mentioned sometimes parents are faced with a choice. How is that choice reflected in this chart? I didn’t get a clear sense of that, necessarily.

Also, of the many recommendations that you made, if there was some way to sort of highlight areas in here that are problematic. We know the long wait for an autism assessment is an issue. In this flow chart, if there’s some way to highlight some of the key issues, like in a different colour or something, just to make it….

As we go through this journey in the next few months, I certainly will have this with me and appreciate that I have this. But if, somehow, there could be a little bit more clarity or information put into it, I think it would be helpful.

[9:35 a.m.]

J. Charlesworth: Thank you for that. Your point earlier got me thinking about the decision tree, in essence. You know, you’re faced with this information. Then what? What opens up, or what closes down? We can certainly take a look at this and see if we can refine it in order to make that more evident. So I appreciate the point, and I’m glad it’s helpful.

I initially looked at this and thought: “Oh my goodness. We have to simplify it.” But then, actually, this is the reality. It’s important for us to start from what is the current state and then imagine what could be, as you said earlier today. So we can certainly add some more that reflects those decision points.

R. Leonard: Thank you, again, for your presentation. The last thing you said was recommending that we work from strength-based versus deficit-based. So I started to….

What does that all mean? Maybe you can help my understanding a little bit. My sense is that there’s definitely a difference between the assessment process versus the support process, so that when you have an assessment where people fall through the cracks or you have a definite assessment, a definite diagnosis, that’s when things go really wrong, and the whole world changes in terms of the kinds of supports that are available. So if we went to strength-based, can you describe how you see the system looking differently?

J. Charlesworth: That’s a good question. I think that strength-based doesn’t mean, by definition, that you aren’t taking a look at where some of the challenges are as well. It’s taking a look at the more holistic picture, and there are two dimensions to that. There’s the child, but then the child in their context as well. How’s the family? What are the extended family supports? What are the community supports, etc.?

When we take a look at doing an assessment, taking a look at the functional needs and some of the challenges, as have been identified, in those various dimensions is important. Also, what the things are that the child is doing well or is coping with or has been able to develop capacity in, so that you’re getting a more holistic picture of the child and therefore are better able to discern the kinds of services and supports that would be appropriate, rather than saying: “Oh, well, the child has this diagnosis. Therefore, this is what the child is going to be provided.”

We have this very narrow window of services and supports. But if you understand that this is a child that has these needs and these strengths…. Therefore, a good array of services or a good kind of service support system that would enable them to develop mentally, mature and develop more capacity would look like this.

Same goes for understanding the child in context. Being able to understand where the challenges are for the family, but also what some of their strengths and capacities are, is really critically important.

Even with the advocacy examples, the advocates are often taking a look — and, Blair, feel free to speak — at what’s going on for the family and, also, what is the parents’ or the family’s capacity to do self-advocacy, to navigate the complexity of the system, or not, and then be able to discern appropriately how best we might fit in. The same would go for the services and supports.

I think it’s basically speaking to…. We have pretty narrow forms of assessment right now: diagnostic — yes/no — or functional. But if we start to take a look at a more inclusive approach, we would be taking a look at the challenges and the strengths in order to discern the most appropriate services going forward.

Do you want to add anything to that, Blair?

B. Mitchell: I think from the family perspective…. Jennifer has summarized it very eloquently. But I think, just to reiterate the point that’s been made in the speaking points, that families do feel very judged. When somebody is coming into their home to — they’re hoping — offer supports, they often feel scrutinized. They often feel judged. They often feel like it’s coming from a place of not understanding who they are or what their experiences have been.

[9:40 a.m.]

Asking families, “What is it you need?” and working from that place with them….Often they know. If you take time to listen to a parent, they know what their child needs. Some parents are struggling with that, but many parents know. Sometimes the services available aren’t appropriate or don’t match what the parent needs. I think it’s just trying to understand from families and taking time with them to find out what the strengths are and what supports they need to move forward.

N. Simons (Chair): Thank you. Just so we know, we have four minutes left. We have Rachna, and then we have Teresa. Just keep that in mind.

R. Singh: I’ll try to be short.

Thank you so much for the presentation. I just wanted to check. This looks very complex. Have you tried to find out how we fare compared to other provinces in Canada? Like, how is B.C. doing? This is the process. Are there other processes in different provinces which are better than this?

J. Charlesworth: That’s a good question. I do not know that. I know that with our FASD project, we’re taking a look at what’s happening in other jurisdictions, but I look to my colleagues.

Any insights from other jurisdictions? No? Okay.

N. Simons (Chair): Thank you. Good question. We’ll follow up.

T. Wat: First of all, I’d like to thank Jennifer for your presentation. It’s a little bit complex, but it’s very educational. The same as for the ministry presentation.

I think you answered, maybe, my observation and my question. From the two presentations, it looks like the initiative for the assessment of the child, any kind of neurodevelopmental issues, arises from the parents. Of course, the parents spend more time with the child, but on the other hand, not every parent is well qualified to be able to take the first step to go and seek assessment, especially the many working mothers. I used to be a working mother as well.

How are we going to solve this issue? Without the parent coming forward, the first step, how is the child going to be assessed? That’s the kind of conflict I’m going through myself.

J. Charlesworth: You raise such an important point. That’s one of the reasons that we’re recommending — and following the recommendation from the Canadian Paediatric Society, actually — that there be regular developmental monitoring between birth and school. Presumably, there are eyes on the child at the school.

That’s for a number of different reasons. One is that it’s non-stigmatizing and normative. It’s like you go to a well-baby clinic or you go for your developmental monitoring, and everybody does that, so you don’t have to have the same kind of fear of stigma or shame by asking for help. Also, it provides those really important opportunities for parents to have a bit of a reality check or gather some information.

For many of us, we don’t know what we should be looking for or if the kinds of things that our child is doing are typical or atypical. We need support as families, especially given the isolation that many families experience. That’s one of the key things of focusing in on the Canadian Paediatric Society’s recommendation, for the very reasons that you’re talking about.

N. Simons (Chair): Thank you very much. Noting the hour, we have to adjourn, but I just want to say thank you very much to all the presenters. We will be listening to presentations from the Ministry of Education, the Ministry of Health, CLBC and the Advocate for Service Quality in the next couple of days.

Thank you very much, Members. Thank you, all who have been paying attention and who are interested in this subject.

With that, I’ll entertain a motion to adjourn. Moved by Ronna-Rae.

Motion approved.

The committee adjourned at 9:43 a.m.