The committee met at 8:04 a.m.

[N. Simons in the chair.]

N. Simons (Chair): Good morning, ladies and gentlemen. Thank you very much for being here for the Select Standing Committee on Children and Youth. Thank you, Members. I know that a few will trickle in as we proceed. It’s a pleasure to be able to continue learning what we can about services to children with special needs.

Today I’m pleased to say that we have presentations from the Ministry of Health, Provincial Health Services, Ministry of Education and Community Living. We have a fairly extensive agenda, and we can just launch right into it. The members might have questions after your presentations, and we’ll just have a discussion and see what we can learn. I appreciate you being here.

[8:05 a.m.]

Why doesn’t the Ministry of Health take it away, and we’ll go from there.

Briefings on Children and Youth
with Neurodiverse Special Needs

MINISTRY OF HEALTH,
PROVINCIAL HEALTH SERVICES AUTHORITY

S. Feulgen: Great. Thank you very much, Chair. I’m Sabine Feulgen. I’m one of the associate deputies for the Ministry of Health, and I’m here on behalf of Stephen Brown, the Deputy Minister of Health. We thank the committee very much for inviting us to do a presentation today on this very important area of clinical work.

I’m very fortunate to be joined by a number of my colleagues today who have, obviously, the expertise in this area — you’ll note that they are all from the Provincial Health Services Authority — and then my colleague from the Ministry of Health, Wendy Trotter, who’s an executive director in this area.

We do not have regional representation here because the regional health authorities are in a provincially provided program. The Provincial Health Services Authority is responsible for delivering all aspects of what they do in this area.

I won’t talk anymore. I’ll hand it over to the experts.

Dr. Maureen O’Donnell, I’ll let you start and introduce your colleagues and yourself.

M. O’Donnell: Thank you very much, Sabine, and thank you very much for the opportunity to come today. I certainly agree with the comments that this is a very important topic.

We’re very pleased to be here and have the opportunity to provide some information. Of course, we’re also pleased to see that our colleagues from the other sectors are also contributing to the conversation, as, obviously, this work is cross-sectoral.

My name is Dr. Maureen O’Donnell. I’m an executive vice-president of clinical policy, planning and partnership at the PHSA. I also happen to be a developmental pediatrician — I see children with physical disabilities myself — and an associate professor in the department of pediatrics at UBC, but I’m really here in the context of my role as executive vice-president.

I’d like to introduce my colleagues: Ms. Susan Wannamaker, who is the president of B.C. Children’s and Women’s Health, including B.C. Children’s Hospital and Sunny Hill Health Centre for Children; Jennifer Scarr, who’s the interim executive director at Child Health B.C., which is our children’s health network for the province; and Dianne Cameron, who’s the senior director at Sunny Hill Health Centre for Children.

Before we proceed with the presentation, I would like to acknowledge that we are on the unceded territory of the Lkwungen-speaking people. We’re really appreciative of the opportunity to be here on this land today.

I have some slides, and I’m going to move into them now. The overarching goal of our presentation today is to really provide you with an overview regarding the services that are offered to children with neurodiverse special needs, including perspectives with respect to the types of services offered and eligibility. We’re going to be providing the perspective of the health sector, but as I said, it’s very important that we recognize that these are cross-sectoral services and that we play one part in the system.

Our four goals for today are to provide you with a brief description about early intervention and identification, to set the stage by talking a little bit about some of the concepts that we feel are very important when we’re talking about this group of children and their needs. Thirdly, we’re going to describe service provision on the basis of functional needs, and then we’re going to describe, finally, some challenges and opportunities for moving forward.

Before we start talking about children who do have identified special needs, we would like to acknowledge that there is important work done in the regional health authorities and through the First Nations Health Authority, particularly with respect to early identification and support for healthy child development. There are public health nurses, primary care physicians, nurse practitioners and primary care nurses who have very important roles in providing developmental surveillance — which is the practice of observing development over time — and supporting healthy development but also prompting referral if needs are being identified by parents or if they identify them when they’re seeing children themselves.

This is very important work, and there is work going on in the province that’s a collaboration between CHBC, which is Child Health B.C., the Ministry of Health and Perinatal Services B.C. to refresh the service standards with respect to healthy early child growth and development. This work is going to provide provincial consistency in how we deliver these services in a public health and primary care network context in the areas of growth monitoring, speech, language, communication, vision, hearing and dental areas. This is important work that’s underway right now.

[8:10 a.m.]

This concept of ensuring that developmental surveillance and early identification occurs is relevant to all children, and it does help to identify those children who have neurodiverse conditions. I just wanted to say that before we get into talking about, specifically, children and youth with special needs.

Moving on, then, to talking about neurodiverse disorders, we’re going to set the stage by talking about some framing concepts. The first of these is the definition. We were asked today to speak specifically about children who have neurodiverse special needs. We are using the working definition that this includes children who have a brain-based developmental condition.

In this presentation, you may, out of habit, hear us talking about children and youth with special needs. But we have prepared this presentation in the context of these children who have brain-based conditions.

In terms of this population of children, over the last number of years it is growing. That really is the result of a number of factors, one of which is prematurity. More children are surviving than previously survived a decade or two decades ago. Also, the treatments that they receive in the neonatal units are changing the nature of the conditions that they have when they do survive.

The second factor is survival in general. This is not specific to the neonatal unit, but children who have special needs often have other medical co-morbidities. We have different treatments now than we had five, ten years ago. That’s, again, changing the survival of children who otherwise would have life-limiting conditions. So in general, the number of children who have special needs and complex special needs is changing and growing. In addition, the complexity of their conditions is also changing as a result of these factors. That’s just important background about the group.

Next I’m going to move into talking about the concepts of assessment and diagnosis. These words are important because they mean different things, and we use them in quite specific ways. We often talk about children needing an assessment or requiring a diagnosis or benefitting from both, hopefully. I just wanted to talk about how we think about these words.

First, there is an etiologic diagnosis. An etiologic diagnosis is about finding out why the child has a developmental condition. This is where we would go and we might do a history. We would do a physical examination. We might do — you can see in the photo there — an MRI or a CT scan. We would do some blood work, looking for metabolic conditions. We might do genetic testing if we’re suspicious that there would be a genetic cause. The purpose of an etiologic diagnosis is to find out why.

The second kind of diagnosis is a developmental diagnosis. This is really based on the constellation of features that we see the child exhibiting in their development. What are their behaviours like? Where is their development at? What are their strengths? What are their challenges? And it might be combined with some of the physical features, like how their muscles work. Examples of a developmental diagnosis are cerebral palsy or autism.

The third kind of assessment or diagnosis we have is assessment of functional strengths and challenges. These are really, most commonly, the foundation for therapeutic intervention. When we’re providing intervention, our goals are to improve function so that the child can be a full and active participant in their life.

Ideally…. I’ll give an example, perhaps. A child who has cerebral palsy, their developmental diagnosis, might be found to have lissencephaly, which is a congenital brain abnormality that explains why they have cerebral palsy. We would also do a functional assessment to see exactly what their strengths are with respect to their gross motor skills, their fine motor skills, their speech and communication.

Similarly, for a child with autism, they might have autism because they have a genetic condition like Williams syndrome. Again, we would do functional assessment to really understand what their strengths and challenges are with respect to their developmental domains.

All three of these are important but have different roles.

The third framing concept is the idea that there are functional groups through which we provide services. As I just mentioned, our goal is to provide services that help to improve function. So it makes sense that we have the way we think about our services grouped into functional groupings so that expertise exists.

[8:15 a.m.]

We’re going to talk about three populations in these functional areas: children who have primary neuromotor conditions or physical disabilities; children who have developmental behavioural conditions, and included in this group would be conditions like autism, intellectual disability, FASD; and the third group are children who have brain-based sensory impairments like sensorineural hearing loss or cortical visual impairment. So grouped around these areas of function.

Our next framing concept is the idea of tiers of service. This is a concept that helps us think about how we organize the service system. I think it’s particularly important when we’re talking about cross-sectoral services, because, again, we all have different roles to play. This is the six-tiered tiers-of-service system, and it’s based on literature from international jurisdictions. It can be applied to the whole system of care as a whole.

There are six tiers, as you can see in the pyramid here. Tier 1, at the bottom in green, is the foundation on which all services are based and would be the kinds of services that would be in many towns and communities across British Columbia. They’re the ones that are offered through primary care networks, through family doctors, through public health nursing and well-child supports in communities.

At the top, in blue, are tier 6 services. These are the provincial one-of-a-kind services that are offered only in a small number of places in the province — perhaps only one — because they’re very sub-specialized in nature. They tend to be complex, they can be expensive, and they’re low volume. So in order to maintain quality, they need to be delivered in one place.

To use a non–children and youth with special needs example, just to explain this, I’m going to talk for a brief moment about something like cardiac services. So if you are in your community and you have high blood pressure, you would go to see your family doctor, who would be a tier 1. They would be very capable of being able to help you with your high blood pressure. If they were concerned that perhaps you had a problem with a heart valve, they might refer you to a cardiologist, who would be an example of a tier 3 provider, a specialist at the community level.

If they were concerned that you had something very serious and perhaps you needed to have a heart transplant, clearly that would be something that would be a tier 6, a provincial one-of-a-kind service. So you would only go to tier 6 when you need that service. The majority of your services would be provided as close to home as they can be, at tiers 1, 2 and 3. So referrals flow up the tiers, and of course, you come back to your home services. They have to work together in constellation.

Similarly, you can see that the higher tiers have more of responsibility in helping to drive out quality improvement and practice across the province.

This is a concept that has been used conceptually for services for many years, including cross-sectorally. I’ll just note that you may of heard some of our colleagues talking about tier 3 or 4 services, and in the past, although there were six tiers, we used to label tiers 5 and 6 as tiers 4 and 3a and 3b. So you might have heard some of this confusion. It’s clear in our heads, but just in case you’ve heard different terms, it’s a change in the numbering that has happened in the last number of years.

What we’re going to do now, then, with having framed those concepts, is talk a bit about the services that are provided in the areas of each of those functional groupings. I’m going to hand it now to my colleague Susan Wannamaker to talk a bit about those services.

S. Wannamaker: Thanks again for the opportunity for us to join you today in this very important conversation about children and youth with special needs. As Maureen talked about, it’s my opportunity to walk you through, really, those three pillars of children with functional disabilities.

We’re going to start with the primary neuromotor conditions. Going back to what Maureen talked about earlier, these are children with brain-based physical disabilities, such as cerebral palsy.

For this service area, and for the subsequent two that I’ll go through, I’m going to walk through sort of the same framework, talking about how children get identified as potentially needing these services, how the referrals occur, what services we provide and how we work to communicate and work in partnership with our community partners across the province to ensure transition, assessment and care and, really, that one system of care across the province.

As we think about a child with motor impairment, we need to think about how that first gets recognized. Primarily, that’s recognized by the parent or, certainly — going back to the tier approach — the tier 1 providers, which in this case would be a primary care physician or a public health nurse.

[8:20 a.m.]

These would actually manifest as having the child missing gross motor milestones. As a result of this, we would see things like the child isn’t walking when they should be, or they’re not sitting as appropriate or even rolling at their developmental milestones. There is also a small subset of children who we actually know are high risk for motor disability, based on prior to birth, based on health conditions that we appreciate antenatally, but also if there is a genetic predisposition.

Moving on to the referral for the child once they’re identified as having missed their motor milestones. In our experience, most likely those children are referred for a functional assessment as well as therapy from a therapeutic service in their local community, usually provided by infant development programs or the child development centres. These are across B.C. and supported through funding from MCFD. In the case of older children who have motor impairment, they also are supported in the schools through funding and programs through the Ministry of Education.

From a diagnostic perspective, these children are referred by their primary care provider to their general pediatrician for a diagnostic evaluation. If required, there is also a subset of these children, based on their complexity and based on the need for a subspecialty assessment, that would be referred on for services at B.C. Children’s Hospital in Vancouver.

With respect to supporting the child’s management and functional goals, if the child development centre in the local community, together with the family as well as the providers, feel that they are at a complexity level that is beyond the ability of those services to support the child, they are then referred by the pediatrician or GP to tier 6 subspecialty services in Vancouver at Sunny Hill.

As we go on to the next slide, it’s my opportunity now to talk to you about what some of those tier 6 subspecialty services are. For neuromotor, they’re organized in five teams. I’ll walk you through what those five teams are. They’re provided on an out-patient and an outreach basis and occasionally require an in-patient visit. Again, we have those subspecialty high acute rehabilitation services available to children across the province at Sunny Hill.

The first team I’ll talk about is our positioning and mobility team. This is a team that supports and provides very specialized equipment, such as customized seating systems; wheelchairs, including power mobility and even for very young children; as well as other specialized positioning. I have to say that we are very proud of this creative and innovative team, and they are internationally recognized for the work that they do, holding a biannual conference. We actually have health professionals coming to us from over 30 countries across the globe. We learn from them, and they learn from us.

The second team is the assistive technology team, and that sees children who have difficulties with communication. This team provides advice from a low-tech perspective, but also very high-technology devices are available. An example of that is a voice output device. With that, a child can communicate through the flick of a finger or through a movement at the back of the neck or with a foot — again, very specialized technologies to support the functioning of these children.

We do want to highlight, though, that we provide this type of service in complement to those provided by Special Education Technology B.C., or SET-BC. We very much are focused on how we complement and are careful not to duplicate services.

The third team is our tone management team. This provides consultation re high muscle tone or spasticity. We would see that in children with cerebral palsy or other brain-based neurologic conditions. This team assesses and offers specialized management, up to and including the admission of certain medications that actually can be delivered, through specialized pump, to an area around the spinal cord.

[8:25 a.m.]

The fourth team is our complex feeding team. I think you can appreciate that swallowing can become a problem for children if they really have problems with moving or coordinating their muscles. This is considered to be a significant health risk, not only from a nutrition perspective but also from lung complications. So this is very important work, from this team’s perspective — to support functioning and assessment.

The final team is our gait laboratory — again, a very high-tech laboratory where we can analyze children’s movements using computer-generated images and vectors. This helps us plan and assess outcomes of our interventions and also is supporting our kids that require very high-level orthopedic surgery.

With respect to the eligibility for these services, as discussed, these children are referred from the tier 2 and tier 3 programs in their community. Their eligibility information is gathered as part of the intake process, and we get that from the parents as well as the community members — again, really thinking about that family of support that’s around the child to make sure that we’re getting the right information to ensure that a complementary plan is put in place.

The next slide really talks about our subspecialty teams. They really do focus on management and treatment, rather than diagnostics. The services are provided very much by multidisciplinary health professionals, who are very highly trained, and they approach this in a very child- and family-centred manner. It’s what best meets the needs of the child.

As noted, these services are complementing the community teams. That really is a theme that carries on through all the work in Sunny Hill. You’ll see that never at any point do we want to take on that role of primary provider. We want to complement that. We want to support the child in one or numerous visits over the course of their lifespan as they transition to adulthood. At the same time, we want to complement services in Health and also those available through MCFD and the Ministry of Education.

Finally, with respect to our linkage to the community teams — as well, we have to put this in context to the parental consent — we will contact the tier 3 community teams and providers before we see the child, to ensure that we’ve got really good information to support the assessment. We will offer for the community team to be part of the consult, and we will have ongoing contact with that community team as the consult is enacted — and, certainly, always with the consent of the parents.

We also have to recognize that some of this is provided through outreach. That is a huge opportunity for us because it’s an opportunity for us to build capacity in our system across the province — supporting other clinicians and supporting training and further education.

In the next slide, this actually highlights our in-patient rehab services. While I won’t spend a lot of time today talking about this, we can certainly answer more questions. Dianne is our senior director and leading this work. It’s just to really give you the information that we actually have a very focused acute rehabilitation unit available for children across the province.

We have 12 beds that we manage, but we flex those beds up to 16 as required over the course of a year — very much supported in that multidisciplinary team approach, always with the goals of getting these patients and their families closer to home and in that transition that’s focused on safety and high functioning.

The next slide leads us into the next functional grouping. These are the children with developmental behavioural conditions. The children in this group usually have developmental concerns, again identified by their parent or their tier 1 provider. Again, their milestones now are focused on language, on cognitive behaviour and abilities and, also, on things like social and communication. In this case, these children are referred to our service for developmental diagnosis and for functional assessments.

[8:30 a.m.]

As the referral is reviewed, the children are directed to one of two paths. One is to our B.C. Autism Assessment Network, or BCAAN. The second is towards our complex developmental behavioural conditions service, which we call CDBC. Both of these are specialty diagnostic and assessment services at the tier 5 and tier 6 levels. Again, we serve children from across the province.

In the next couple of slides, I’ll go into the specifics regarding BCAAN, as well as CDBC. With regard to BCAAN, this is, as I said, tier 5 and tier 6. This is for children who are of suspicion of having an autism diagnosis. I think this committee is well aware of the fact the number of children for whom there’s suspicion is substantially increasing.

Just to give you an idea of what that looks like: in 2006, the U.S. Centre for Disease Control identified that one in 110 children was noted to have a prevalence of autism. By 2014, that prevalence had doubled to one in 59. Since 2014, we continue to see double-digit increases in the request for assessments through our BCAAN network.

Also, according to MCFD, BCAAN completes about 70 percent of these assessments, with another 30 percent of those assessments being provided by private assessors.

With regard to referral to the program, a primary care physician, a speech language pathologist or a pediatrician can refer to the program. We see children aged 18 months to 18 years. There’s a bimodal distribution of what this referral pattern looks like, with a primary grouping of young children who exhibit autism-like behaviours. It’s part of their developmental profile that has been identified.

Subsequently, the second group is our school-age children. They’re referred to the program because they are demonstrating autism-like behaviours in the context of their school setting. We’re also trying to understand whether the behaviours they are exhibiting are related to an autistic disorder or whether there are other complicating medical factors that are impacting that, such as mental health disorders.

There is very much a focus on our intake and doing that as quickly as we possibly can — to understand that the child is directly and appropriately streamed to see the BCAAN professionals. If it is thought, perhaps, that the child should be seen by another intake service, then that referral is made. So we don’t strand the child without actually having an appropriate referral, based on that intake.

Our purpose, again, is diagnostic and determines whether or not the child has an autistic spectrum disorder. We also, again, very much liaise back with the community. We follow up regarding the assessment, and we bring together the family and the members of the community team to discuss the findings, the diagnosis and the recommendations for interventions.

We also do share reports, but again, we also honour the family’s wishes as to how those reports are shared.

These services, as tier 5 and 6, are provided either at Sunny Hill, where we primarily see residents from Fraser Health, as well as Vancouver Coastal Health, in the regional health authorities or in other services provided closer to home in the other regional health authorities.

As we move to the next slide, we have to also recognize that there is tremendous interest in ensuring good services for children with a specific diagnosis of autism. There are many other children who do not meet the criteria and who have significant developmental, behavioural and functional challenges. This is the group of children that includes conditions that Maureen mentioned earlier, such as those with intellectual disabilities, fetal alcohol spectrum disorders and other complex developmental conditions. This is the group that’s seen by our CDBC team.

To gain access to the service, very similar to BCAAN, you see a referral from our general practitioner, through pediatrician and for speech language. At the same time, it’s not uncommon for these children to also be referred to the child development programs. As they’re waiting for their diagnostic assessment, they’re actually gaining access to therapies, which is assisting them in their functional domain.

[8:35 a.m.]

Within CDBC, we ensure we’re providing, again, that T5 and T6 service that is complementary and is not taking on the role of other providers in the system. With respect to eligibility, children who are seen through this program have multiple areas of developmental concern. They have developmental diagnostic questions. They may also have etiological questions for the team to consider and determine an answer for. As an example to that, a child may have FASD. So it’s deciding on whether it’s that or whether there’s another genetic condition that’s attributing to the developmental challenges.

For both BCAAN and CDBC, we provide this very much in a systemized, standardized approach. We have provincial standards and guidelines and very specialized trainings for the clinicians who work with these populations. The program also assures financial accountability, and we carefully track performance indicators and our outcomes.

These children, like BCAAN, receive their functional assessments either at Sunny Hill or in other tier 5 services across the province. We also, like BCAAN, share and do that strong collaboration with our community partners to again ensure that there’s good information on transition and how we set up the family and child for success.

Finally, the next slide is giving you an overview of the last subset of children. These are our children with sensory impairments. These children have hearing and visual losses that are neurologically based. These children are often diagnosed early on and usually by providers such as ENT surgeons, ophthalmologists, audiologists and neurologists. They actually have their etiologic and medical diagnoses made.

However, in our experience, as time goes on with these children, they also may start to develop and exhibit other developmental challenges. With regard to that, this is where both our hearing and our vision loss subspecialty teams can step in to provide further understanding and functional assessment to support the challenges being exhibited by those children. Like the other areas, again, we very much focus on how we link back with the community and share our reports to ensure that seamless transition for children.

Now I’m going to turn it back to Dr. O’Donnell, and she’s going to describe some of our challenges and opportunities for moving forward.

M. O’Donnell: Moving on, then, to some of the challenges and what we think are opportunities, moving forward.

I think, as first mentioned, we realize that for all of us, one of the challenges faced by the system is that the numbers of children and their complexity are increasing, which, of course, creates challenges for us in addressing that demand.

A second challenge relates to the fact, the positive fact, that there are new evidence-based assessments and treatments that are always coming through the literature. They’re here now, and more, of course, will be coming as we move more into the genomic era. These have to be translated into practice in a consistent manner across our settings and sectors, so that requires us to collaborate. It’s exciting but will be work, of course, for us.

The third challenge and opportunity is that we really want to work together to ensure that across the sectors, we are aligned in our aims and in our purposes.

A fourth challenge relates to data. We really do need data to assess the effectiveness of our services and to plan. That’s true within our sectors, as well as across the sectors. A provincial approach to data collection will enable us and does enable us to monitor and evaluate, to look at quality improvement and to do our service planning.

A final opportunity and challenge relates to making sure that we’re always thinking about new and innovative ways to support families in meeting their needs, as well as the needs of their child.

We do have some mechanisms and what we believe are opportunities that are either underway or open to us in the future.

[8:40 a.m.]

The first relates to the healthy starts initiative that I mentioned at the beginning of the presentation. This is about coming together to ensure that at a public health and primary care setting level, we’re working together to use the best possible evidence from the literature to inform the activities of the providers at that level. The healthy starts initiative, as I mentioned, is already underway as a collaboration between the Ministry of Health, Child Health B.C. and Perinatal Services B.C. That’s important work.

A second opportunity relates to using the tiers of service approach to provincial system planning. Over the last year, we have completed work — you can see it in tiny pink on the cover there — on a module, a tiers of service module. It’s related to children and youth with physical — the neuromotor group of kids. This was work that was done very collaboratively. It included our MCFD colleagues, our Health colleagues and therapists from the school districts.

Together we mapped out, across the six tiers, a plan for how we can deliver services to children with physical disabilities. That work has now been completed and accepted. We’re certainly ready to be using it conceptually as a frame for how we think about services and standardizing the approach to services across the province and are identifying next steps of how to move that forward.

A third opportunity relates to really making sure that we continue to use cross-sectoral approaches to challenging issues. An example of that relates to work that is currently underway about the availability of psychoeducational testing. This is work that’s being carried out — it’s still underway — with the Ministry of Education, MCFD, the Ministry of Social Development and Poverty Reduction. Jennifer is very involved, from Child Health B.C., as well as others.

A fourth opportunity relates back to the question of data and identifying mechanisms that we can share information. This continues to be important with respect to individual children and making sure that we’re sharing reports and sharing information — of course, in conjunction with the permissions of the family. It also relates to sharing data across our programs within sectors and across sectors, in order to have effective system planning.

The final opportunity relates to engaging parents, in supporting them in novel ways. A great example of this is a current research study that we have going on that’s funded by the CIHR. It’s called the BRIGHT Coaching research study. It’s a randomized trial. It’s looking at coaching intervention that is aimed to support families and to empower them. We’re currently in year 2 of that study, and it’s exciting to see it moving forward. Our child development centres, the MCFD-funded child development centres, as well as Sunny Hill, are assisting with the recruitment of parents to that study.

We hope that has provided you an overview of how we are approaching services for children with special needs and some of the services we’re providing. We once again thank you so much for the opportunity to come and engage in this conversation, and we look forward to answering any questions you have.

N. Simons (Chair): Thank you very much for those very informative presentations. I really appreciate that.

I know that my colleagues likely have questions. Maybe they’re still formulating them. I usually guess before they ask.

Ronna-Rae has a question.

R. Leonard: Thank you very much for your presentation. The last thing that you were talking about, this BRIGHT Coaching…. What kinds of numbers are we talking about in terms of families that are participating, and how long is the research anticipated to go on?

M. O’Donnell: Thank you for the question. This is a national study. I am one of the co-PIs, co-principal investigators, on the study. It’s happening in four centres across Canada. We’re having the whole province involved by engaging the child development centres. Winnipeg, Montreal and Halifax are the other sites. We’re going to have a grand total of 300 families in the randomized trial. We anticipate that approximately 100 of those will be from British Columbia.

The intervention itself is a series of 12 modules that families complete. Families will have the opportunity to determine how quickly they want to do those. They meet with a coach, virtually, and they have an opportunity to do them weekly if they choose to. Some families will probably say that’s too often, so then it could be biweekly or monthly.

[8:45 a.m.]

The family’s involvement could be anywhere from 12 weeks to 12 months, depending on what they choose. The study itself will be completed in another two years. We’ve just started the recruitment.

R. Leonard: Is the focus primarily on medical? Is it everything? Is it holistic?

M. O’Donnell: Yeah. The focus is on the family and on empowering the parent. There are four main sections to the study. One is about them understanding their child. One is about understanding developmental concepts. One is about understanding the system. And one is about supporting their own family and their own well-being. It’s very holistic.

The goal of this particular work is actually not to…. We have a subquestion we’re asking of whether or not it affects the children’s development. But the actual goal is to look at how it affects parent empowerment and parent well-being. We know this can be a very stressful time for families.

M. Stilwell (Deputy Chair): Thank you for the presentation. It was very informative, lots of details.

Just wondering and curious, with your mention of the increasing prevalence or the rise in autism and the morbidity of more children living longer and such…. At Sunny Hill, when somebody is referred, what is the current wait time to then get into the queue to start the process of all the assessments and diagnoses?

S. Wannamaker: Specifically for autism, right now our median wait time, and we’ve just reviewed the data, is 58 weeks. We’ve been able to work with the Ministry of Health to get an infusion of funding, additional funding this year, to do an additional 437 assessments on that piece.

It’s something…. We’re doing some diagnostic work to understand the increasing prevalence and demand for the services. We’re looking at redesign, so how we can actually move the needle on the wait time, because again, we’re looking at a cross-functional team with that.

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

M. Stilwell (Deputy Chair): If you’ve got extra funding to cut down the wait-list, has there also been additional funding allocated for once those children are diagnosed so that there will be services and programs available to them? Do you know?

S. Wannamaker: That actually hooks into MCFD. That’s not funding that we support through Health. That’s MCFD funding.

N. Simons (Chair): Thank you.

We have Rick, Ellis and then Laurie.

R. Glumac: Hi. I’m curious to know more about how, in the context of…. In our province, we have all these different health authorities doing their own thing. How do we collect and share data in that kind of a system? For example, health records are managed in different ways in all of the health authorities. How do you do that in that kind of environment?

S. Feulgen: Well, there’s a requirement for certain reports to be provided through to the ministry and through to CIHI on a regular basis. All that information is compiled by a data analytics group that the ministry supports. We are actually working, always, to improve the standards and quality of the data that we’re collecting so that it becomes more useful. I would say, right now, in the acute care setting, we actually have a lot of data that we collect and have worked on to improve over the years.

Where we probably are working very hard now is in the community area. I would not say we have a consistent collection of data, because of course a lot of that data is within the family physician’s office, where it’s privately held. So it’s not a natural conduit to come into our data system.

As we develop our primary care networks, looking at those integrated team-care functions, we’re hoping to actually improve on that and have more of a connectivity between the acute care system and the primary care system, as well as being able to collect more physician data on their patients.

Right now most of what we really focus on is our MSP billings, which are obviously not really reflective, necessarily, of the whole patient. It’s a work in progress. There are lots of privacy and security issues that we continue to work through. But that is the idea — that we’re going to have, at some point, the continuum of care all the way through.

[8:50 a.m.]

Yes, we get a lot of data, but it’s not necessarily easily aggregated from the communities.

I don’t know, Wendy. You may have something more to add, in terms of data, that you’ve seen. No.

R. Glumac: Isn’t the data in all sorts of different forms and stuff like that, as well, when it comes to you?

S. Feulgen: I think what we’re trying to do…. Like I said, we have the standards that we’re working through in the acute care system. I think that we’re seeing more and more improvements on the quality of the data we collect consistently so that it is easily aggregated and useful. But the community care, you’re absolutely right. There are a lot of EMRs in the system, and they’re collecting different fields of information.

Again, it’s actually the quality of the data and the input. There’s a lot of guidance that’s required to physicians in terms of how they input their data so that the data that you’re receiving you can actually measure against each other.

You’re absolutely right. That is an area of focus for us at this point.

E. Ross: Sorry for being late for your presentation. I take a special interest in the topic of children and youth with neurodiverse special needs. I’m pretty close to that issue for the last 15 years or so.

I’ve heard you say, as well as is printed here, that the population is growing in terms of these children with neurodiverse special needs. I understand we were talking about FASD. We may be talking about genetics, but is there enough data to talk about why this problem is growing? I’m talking more about: is there something social that’s happening that the government should be aware of? Is it economic?

I do know that you have preventative information out there as well as education. But is there one large chunk of information or data that could point government, to say: “This is where you should be focusing so we see less of these incidents”?

M. O’Donnell: It’s a good question. I guess I think…. Well, two thoughts.

The first is that I think we do know that there are some medical and scientific changes that are increasing survival. That, for the most part, is very positive. It’s also positive that children who otherwise would have passed away are surviving, and their parents tell us that they’re pleased and that they have good quality of life. I think that that is definitely one of the reasons that we see increasing numbers.

The second is that I think there is a lot more awareness of a lot of these disabilities than there had been in the past. Again, that’s positive, because it means that if people are aware that a child has challenges, then hopefully, that’s going to instigate therapy and support for the child and their family. With increased awareness comes increased prevalence numbers.

A third factor, and this one is sort of more specific to ASD, is that there have been changes in the diagnostic criteria over the years. The guidelines that are internationally used for diagnoses have changed the features that are included in the diagnostic criteria. That does also play a role in the changes in prevalence numbers.

The final question you’re asking relates to social determinants of health, I think, and the role they play. Certainly, children who are…. It’s not a complete linear line, but there is a relationship between the environment in which children live and their outcomes. There’s a gene-environment interaction — an epigenetic phenomenon, where the environment in which a child lives combined with their genetic makeup and the conditions that they might inherently have can lead to a particular outcome.

It’s not a completely straight line. But if a child is more at risk because of who they are as a person, they may do less well in a less-advantaged environment. There is some very nice work by Dr. Tom Boyce who used to be here as a Sunny Hill research chair.

[8:55 a.m.]

He has moved back to California. We actually stole him from there. He did some very nice work looking at this relationship between social environments and genetic makeup that we all have as a person.

E. Ross: I know it’s a sensitive topic, and maybe it’s a politically incorrect topic. But it’s really talking about preventing this problem in the first place and keeping it from growing bigger, as outlined in your presentation.

Is there a breakdown? I assume there’s data here, and I know it’s sensitive data, as it’s a topic nobody really wants to talk about. But is there a breakdown — even if it’s just a pie chart — to show how much is attributed to risky behaviour, how much is attributed to genetics or otherwise so that we could get a good understanding of where, as a government, we could put policy to make sure that the incidents decrease, not rise?

The results are pretty obvious, and then the measures that have been put in place are pretty obvious and admirable. But I’m of the mindset of: how do we address the problem in the first place so we don’t have these problems or, at least, decrease the problems? Is there that type of data that we could look at?

M. O’Donnell: It’s a good question. I’ll let my colleagues chime in if they know of any. But to be completely honest, I’m not aware of such data. It is because of this relationship, that it’s not a straight causal relationship, that one factor causes this and another factor causes that outcome. It’s because there are these interactions.

I think it’s fair to say that undoubtedly, safer environments and health-promoting environments help all of us to thrive, including children and children at risk. But I’m not aware of specific data that says this part is attributable to a particular risk factor, and this part is contributable to a second. Relationships are quite complex.

E. Ross: Is it possible to, actually, even just for context?

M. O’Donnell: Well, there are research studies going on right now. I was at the American Academy for Cerebral Palsy and Developmental Medicine meeting in the fall in Cincinnati. There were some very interesting studies there being presented, using huge population databases in the U.S. and linking that with the genetic work to look at some of these interactions. So there are people that are looking at these questions, but they are just scratching the surface of the results at this time. But it is really important work.

L. Throness: I just wanted to mention to my colleagues that I think there’s opportunity for examining electronic health records in a little more detail. There’s, I think, an opportunity for a cross-sectoral approach to that, where we follow a child through and the child doesn’t fall through the cracks. Maybe we can consider that in the future.

I would note with respect to waits for autism that when we do adoption, it takes a long time to be adopted — a child in care to be adopted. From time to time, the ministry will hire a contractor, instead of ministry staff, to help hurry up that process. I note that on autism, there is a private diagnosis on autism that is possible. If we have a 58-week wait, why wouldn’t the government do the same thing as adoption and contract out some of that work to private providers who could reduce those waiting lists?

M. O’Donnell: Maybe I can start. Dianne, I don’t know if you, or Susan, want to chime in here.

In fact, the BCAAN program, for example, is a provincial program. It’s tier 5 and 6, as I mentioned. In fact, regional providers are engaged in that.

L. Throness: What does that mean?

M. O’Donnell: It means seeking out providers, like pediatricians, psychologists — people from the private sector, in fact — to be participating in the assessments. Finding those professions can be quite challenging because the supply does not equal the demand for those services.

Dianne, do you want to add anything?

D. Cameron: Probably the other thing, as well, is that autism from a diagnostic perspective is very complex to do, especially when you’re dealing with kids who may have co-morbidities of other developmental conditions and mental health conditions as well. So as well as finding the assessors, it’s the extensive training that is required to ensure the accuracy of the diagnosis for the child.

[9:00 a.m.]

There are a lot of kids who present with autistic-like symptoms, but in actual fact, they are actually more from a mental health perspective or another developmental condition. It’s quite a complex process to do. As Maureen said, it’s not just finding the people, but it’s training and getting the commitment from the people to maintain the training to ensure the high accuracy, as much as possible, of the diagnosis.

And we do have it. We have health authority people. We have private sector people through BCAAN. We have child development centre people through BCAAN. So we are actually reaching out to a wide variety of people to try and get the assessments completed as much as possible.

T. Wat: First of all, thank you for the two presentations. It’s really very educational and very comprehensive. We are absorbing a lot of information.

From your presentation and what you talk about, it seems that we have a drastic increase in the cases of children and youth with special needs. From your perspective, there’s…. We have assessed so many cases, but then, have we increased the budget to go in line with the increase in the cases?

M. O’Donnell: I guess from the health perspective, we’re responsible for the services mostly related to behavioural development conditions that we talked about. We’re responsible for the assessment and diagnosis piece, but the services — the interventions that I think you’re speaking of — are provided through the Ministry of Education for school-aged children and through the Ministry of Children and Family Development for younger children. I think those questions would be probably better or more ably answered by them.

T. Wat: But you still have cross-communication between your ministry and the Ministry of Children and Family Development and also Education. Since you are the one that initiated the first step, and you found so many cases…. Is there any coordination among all the other ministries?

S. Feulgen: I leave it to Dr. O’Donnell, but there is the cross-sectoral planning that goes on within ministries. In terms of the allocation of budgets in MCFD and Education, we don’t determine that, obviously — how they’re allocating their budgets to various programs that they deliver.

I see that you’re saying there’s no continuum. You’re doing an assessment, and then you’re not seeing the follow-through, necessarily, or what the wait-list is once you come out of autism diagnosis.

T. Wat: Do you have any data to come up…? Since you refer all the cases to the other ministry, how many of them are being taken care of? Are there any statistics on this?

D. Cameron: No, we don’t have it.

M. O’Donnell: No. I guess the one piece of information we do have relates to BCAAN, Dianne. There are discussions with MCFD specifically related to the relationship between the diagnostic assessments that are done through BCAAN and the accessing of autism funding through the MCFD autism funding and looking at the relationship between those two.

That work is done to examine the relationship between those two program areas, so we do have that data. But similar data doesn’t exist related to the other children with complex developmental, behavioural conditions or neuro-motor conditions.

T. Wat: That means you don’t know how many cases fall through the cracks that have not been taken care of.

A Voice: That’s right.

T. Wat: That’s the frustrating part, right?

N. Simons (Chair): For the record, they were nodding to your comment there, Teresa — just for the purposes of Hansard.

Thank you very much.

R. Singh: Thank you so much for your presentation. I know you are following the international standards. Now we know that ASD is a big spectrum, and we see the kids on both ends.

When the parents come, are they just told that the child has ASD? Like, are they told where on the spectrum the child falls? Just to assist them, because when I look at the children…. Sometimes somebody tells me that this child has been diagnosed with autism, but I don’t see those kinds of symptoms that I see in some other child with very, very obvious symptoms.

D. Cameron: You’re right. The kids that get diagnosed are kids with very, very mild impacts on their development to quite significant impacts on their development. The other impact is that over the last few years, we are now able to have the standardized tools to diagnose kids earlier. About three to four years ago, we started diagnosing kids under the three years of age.

[9:05 a.m.]

That being said, those are the kids presenting with probably more significant features of autism. We have to monitor those kids because of the development age. Some of the kids may look like they have autism symptomology, and then as they get closer to school age, it turns out it might be something else, just because of the age level of the child. We’re limited in the developmental assessments that we do because of the age level of the child. So it’s not just the severity of the symptomology, but it’s also watching how the children grow.

Some of the kids in Susan’s presentation, when she talked about the bimodal kind of distribution…. We’re seeing some kids referred at school age, and it’s because they’ve had other potential learning disabilities, mental health features that almost have masked the autism. All of a sudden, as the child is getting older developmentally, cognitively, they’re showing these other kinds of signs. The school teachers and community people are saying: “Okay, maybe autism.” So it’s kind of this bimodal pattern. Those are probably the kids with the milder symptoms of autism, but they’ve got co-morbidities of other developmental and/or mental health.

Does that help answer your question?

R. Singh: That really helps. But you said that when they are diagnosed earlier, like age three, and then you follow up, there’s contact with the families then?

D. Cameron: No. We leave it up to the primary care physicians to do the follow-up with the family. At this point in time, BCAAN isn’t funded to look at, or it’s not our mandate to do, the reassessments of the children. But very definitely, that’s what our recommendation is to the children’s pediatricians and everybody else — to keep following that child. That child may or may not require further assessment for something else closer to school age.

M. O’Donnell: Just to clarify one of the points that Dianne made there with respect to reassessment. I think that because our services are consultative services — as we were saying, we’re trying to provide those tiers 5 and 6 services — we wouldn’t automatically see children again over time. That’s where we work with the community partners, as she said, and give them direction about what to watch for. Then if we need to see them again, we will.

We wouldn’t automatically reassess, just to expand on what she was saying there. You can imagine that if we were reassessing in case, we would use up slots that would then not be able to be used for children that do need their first assessment. But if that primary care provider really feels that the child needs to be seen again, then they would make a re-referral and they would be seen.

N. Simons (Chair): Ronna-Rae, you get extra time.

R. Leonard: Thank you very much. Just quickly, you go through the intake process and do an assessment. How often do you get family coming back saying: “Can you reassess? We don’t buy what you’re saying”?

D. Cameron: It’s probably about, maybe, 5 to 7 percent of the time. I’m trying to think of our stats.

For some of it, it’s families who are desperately wanting to be able to access services. So having an autism diagnosis sometimes gets them to a certain level of services that they need. For other kids, actually, as I mentioned before, over time, things have changed with the child. So the physician or the local community or the parents are saying: “Okay, can you please reassess? I’m seeing different things now.” Then the kids will come back, and we will take a look and see what kind of different information…. If there’s different information coming back from the physician or the family that warrants a second assessment, we will have the child back in and do a second assessment.

N. Simons (Chair): Thank you, Members, and thank you very much to all of you who have appeared before us today. We thank you very much for your knowledge and for sharing that with us and for your service to the public.

We’ll take a five-minute recess.

The committee recessed from 9:09 a.m. to 9:16 a.m.

[N. Simons in the chair.]

N. Simons (Chair): I appreciate the previous presentations. Now we’re very pleased to have with us representatives from the Ministry of Education who are going to give us some insight into special services for children with special needs.

I would ask you to introduce yourselves and inform us of what we need to know.

MINISTRY OF EDUCATION

J. McCrea: Excellent. Thank you. Good morning to the committee. I am honoured to be on the traditional territory of the Lkwungen-speaking people of the Esquimalt and Songhees First Nations.

I’m Jennifer McCrea. I’m the assistant deputy minister of the learning division within the Ministry of Education. Inclusive education is one of the areas of responsibility within my portfolio.

We’re here today on behalf of Deputy Minister Scott MacDonald, Deputy Minister of Education. With me is Patricia Kovacs, provincial director of inclusive education.

P. Kovacs: Good morning. I’m Patricia Kovacs, and I’m the director of inclusive education. I’m a special education teacher for my career, and I have a master’s in educational psychology.

N. Simons (Chair): Welcome to you both.

J. McCrea: This morning we would like to take the opportunity to walk you through three components of what a young person with a diverse or a disability looks like within the schooling system and the supports that are available to them: (1) the role of the Ministry of Education and the role of school districts; (2) the students in the system, who they are and what the services look like when they’re provided; and (3) improvements that are underway within the Ministry of Education.

We would like to begin by talking about the responsibilities within the education system. This is where it’s different than some of the other ministries that you have heard from and will continue to hear from. The Ministry of Education is not a service delivery ministry. I think that’s fundamentally important. The services are delivered by the locally elected school boards — we have 60 of them across the province — and the Independent Schools Association.

One of the things that the ministry does is…. We are responsible for setting educational standards, looking at our policies to ensure that they are enabling supporting young people, allocating funding in order to support not only all students but students with diverse learning needs and what that looks like in a supplemental form and extra supports that would be required, as well as: what is the achievement of our young people in our province? When we say that, we mean all young people in our province.

There are two fundamental pieces that the Ministry of Education works and guides on. One, all children can learn. That is a fundamental belief within our division and within our ministry. Two, every child deserves the right to be educated and to be included in our school system. Those are the two guiding principles within the ministry and within our personal belief systems.

[9:20 a.m.]

The boards of education are where the services are decided and delivered on the ground, so it is the boards of education that identify what the students need. They work with the families, the parents, the educators, and they look at assessments. We heard a lot this morning around the medical diagnosis. How does that medical information come into the system, and how is it translated then into the needs in the schools and in the classrooms? How do those two pieces work together?

They create and deliver a plan for supports and services for young people and families. They look at those transitions between grades, between schools, as you move from an elementary, middle to a secondary model, as well out of school, and what a post-secondary or opportunities in life look like through some of our community partners. And they are responsible for hiring specialist teachers and education assistants within the school district.

We have a number of pieces in the ministry that guide our work. First and foremost is our School Act. Within the School Act, it clearly states that every student has the right to attend school. But we also set the framework for inclusive education classrooms and any accommodations and adaptations that may be required to ensure that that student is set up for success and that additional barriers are removed for that young person.

We have ministerial orders that include individual education plans. So as a young person goes through and we have a medical diagnosis, they use that with teachers and professionals. The school community comes together and looks at what that education plan for a young person needs to look like, and they write it down. That is done with families.

We also have some provincial resource programs in the province. We heard the Ministry of Health talk about their tier 6. In education, this would be our tier 6. Some of the provincial resource programs…. That is our top-tier service. These are provincial programs that have expertise attached to them. They’re twofold: (1) to help teachers learn and develop their practice to be able to meet the needs of the young people in their classrooms and (2) to work with young people themselves, in some cases.

Three I would just like to highlight are our provincial outreach program for fetal alcohol spectrum disorder, the provincial program for autism and related disorders, and then there is another one that’s important to mention because it’s our early intervention program, our provincial program. What they do is look at learning disabilities and help to support teachers very early as learning disabilities start to show up in a young person’s life. I should also mention that we have a policy manual that guides school districts on what that looks like.

Supplemental funding. The provincial resource program and supplemental funding — and we’ll get into categories in a minute here — are in addition to the base allocation. The provincial base allocation, on average, is $7,300 a student in the province. When there is a young person with a diverse need, they move into having an individual education plan and having that medical diagnosis and designation within our school system. There’s supplemental funding that comes with that, and we’ll walk through those pieces.

Then we are doing a lot of work in the ministry around our outcomes data, and we’ll talk a little bit about that — reporting and ensuring that students’ needs are being met. But also, how are we ensuring that the right school completion or graduation path is being used for that young person? Going back to our first belief that every child can learn and every child deserves to be here, how do we ensure to support that?

Boards of education take all of those guiding documents from the ministry, and then they look at their individual policies. What do they need to do? How do they need to resource and staff? What specialists do they need? What kinds of education assistants with specialty training are they going to be needing?

They have inclusive education learning teams. That’s a collection of experts that come together within their district to look at the needs of the young people within their communities. Then they also look at the assessments. They look at where they may need additional funding, and that request is then made to the ministry. Then they really think about the supports and services that a young person needs and how they are going to plan and deliver those within their home communities.

[9:25 a.m.]

In order to qualify for inclusive education funding from the Ministry of Education, a young person needs to be assessed. They also need to have a medical diagnosis. We heard a lot about that from our partners at the Ministry of Health. From there, the school districts take that information and designate the young person into one of the 12 ministry categories. Each category outlines criteria for designation, and we use the DSM-5, the diagnostic manual used by the health system, to look at what that looks like and how we match it up to learning needs. School boards are fully funded by their categories which the young person has been put into.

There’s also a requirement that the young person have an individual education plan. What will their learning journey look like? What additional supports could there be? It could be anything from a young person needing to do their exams or their assessments with more time or in a separate room, or they may need technology, they may need an aide, or they may need some specialized services. It runs the full gamut in that place. This school year the ministry has provided, to the 60 school districts, almost $600 million in supplemental funding to boards of education for inclusive education purposes. That’s over and above the $7,300 per person that they receive.

We use 12 categories in the Ministry of Education. We have three levels of funding of what we call the low-incidence categories. That’s where the supplemental funding comes in. Our highest-needs young people in the province fit into two categories: our physically dependent and our deaf-blind students. The medical diagnosis, the learning needs, the supports, working with the families — that would develop an individual education plan. One of the important pieces to ensure that there’s clarity on at this point is that while the young person needs a diagnosis and needs to be in a designation, that funding goes to the school district, and the school district then decides how to use the needs.

We heard the question earlier around a young person on the autism spectrum disorder: what does that actually look like, and how does it present? There are no two children with autism that present in the exact same way, which also means that there is no prescriptive way in order to provide those supports. They need to understand, they need to work with families, and they need to figure out what those supports actually look like.

One young person may need quite a lot of supports, and the other, like I said, might just need some extra time, might need some modifications to their education program. When we look at the funding and the funding goes to the districts, those are the decisions that are made by the locally elected school boards.

Level 1 is funded at $38,800 per designated student in those two top categories. Level 2, which is the one we hear the most about and where the bulk of the students are, is funded at $19,400. There are five different categories of young people that fit into this level 2 funding: moderate to profound intellectual disability, physical disability or chronic health impairment, visual impairment, deaf or hard-of-hearing and autism spectrum disorder. Level 3 is $9,800 per student that goes to the school district. That is for intensive behaviour interventions or serious mental health issue students.

What is important to know is that the block funding category — sorry, I misspoke; it’s $7,423 — is what we call high-incidence categories. Back in the early 2000s, this money, these four categories, were moved into the block funding — the student amount that goes out to school districts. All school districts in the province received a percentage increase.

What we know is that these students need services, and they show up in many ways, in many different young people in the classroom. So it was just recognized at that point that we don’t need diagnosis. We just know what’s happening in our system. Let’s move the money to the system to get the supports there early. So there were four categories that were moved: mild intellectual disability, gifted, learning disabilities and moderate behaviour support and mental illness.

[9:30 a.m.]

Speaking specifically to the neurodevelopmental disorders, as we talked about. The important piece on this is kids aren’t neat and don’t fit into boxes. You can’t look at them and say: “If you this, then you’re this category in the education system.” We don’t have a category in the education system for every single diagnosis. What you’ll see here on this chart is that a number of the neurodevelopmental disorders can show up in multiple categories. That’s where the information from teachers and families and the experts in community working together decide where best to place that child.

We would almost argue to say that these neurodevelopmental disorders could be present in almost all of our categories, but we’ve tried to break it down. For example, intellectual disabilities. That could show up as mild, moderate or profound, depending on how that young person is presenting. Impairment in vision or hearing could show up in categories such as deaf-blind, visual impairment, deaf or hard of hearing, or physical disability. FASD and cerebral palsy are considered physical disabilities and chronic impairment. We don’t have a category, again, for every single diagnosis that’s set out from the medical field.

We heard about numbers and data earlier. So what does this look like? In our province we have 655,000 young people attending our K-12 schools, both public and independent. Of that, about 11 percent of young people are what we would call our students with diverse learning needs or disabilities. It’s interesting, historically, looking at that data. We have sat in this province at about 10 percent of the student population historically, so while we haven’t seen a huge growth in the number of students with special needs, we have seen growth in certain categories. That’s what we’ll talk through here.

The biggest growth is the line there, what we call category Q. Those are our learning disabilities. As a reminder, that’s where government of the day recognized that students have all sorts of learning needs. Let’s move it into our base allocation funding, and let’s get the supports early for a young person.

The other piece that we have seen a large growth in is our category G, which is autism spectrum disorder. One of the pieces…. There are a couple of considerations. We heard about the health system and doing miraculous things for families. The other piece is that in education, that category went from autism to autism spectrum disorder in the last five years, so we have seen a growth in that category. That is, by far, our largest-growing category. Over the last five years, in an individual year you could see growth of about 500 students being added to that category’s population. Last year we had about 1,000 young people identified and put into that category.

The lowest percent are our level 1 students, our highest-complex young people in our province, and that’s about 1 percent. As a reminder, that’s the physically dependent deaf-blind. About 50 percent of our students are in what we call the high incidence and outside-of-the-block funding.

What do we know about these kids? They’re doing great. We have an amazing school system. We have amazing teachers in the classroom and educators at the school level and at the district level that totally believe that young people can learn. What are those supports in order to enable success for that young person?

Our provincial average for school completion — this is the six-year Dogwood — is just under 85 percent. When we look at our students, all of our students — there are 12 categories that we use — 75.5 percent of those students are leaving our school with a Dogwood. They are ready to enter post-secondary and are set on their way and their journey. That is fantastic.

[9:35 a.m.]

Traditionally in public reporting…. There was a decision back in the ’80s. This is a piece that the ministry is undertaking. The Ministry of Education publicly reports out on what is identified as performance-orientated group. There was a decision made, well back while I was still in high school, around who these kids would be that could potentially graduate.

One of the quite appalling things, to me, which is why Patricia and I are undertaking this work…. In our perfor­mance-orientated group, what we’ll see is that category G, which is our students on the autism spectrum, are not in the performance-orientated. So 20 years ago there was no expectation that a young person with autism would grad­uate.

I know, for a fact, and we’ve shared a story this morning: my nephew has autism, and he will absolutely graduate high school. He may cure cancer. He may not be able live on his own because he might leave the stove on. But we know that kids have amazing abilities, and it’s our job to meet them where they are.

When we look at these numbers, we need to be proud of them, but we also need to recognize, as a system, we can do better, and we have to do better.

When we’re looking at…. There’s another piece that this government started a few years ago that government decided was around Evergreen school completion certificates. It’s different than a Dogwood, because what happens is that when an individual education plan is being created, that’s where it starts to chart a young person’s course around, “Are they on a graduation track?” so Dogwood, or “Are they on a school completion track?” We believe that there are only very few exceptional cases where a young person with a diverse learning need or diverse ability should not be on that graduation track.

One of the things that’s happened in this province is the Evergreen school completion certificate. We have been very intentional about working with school districts to ensure that only students with an IEP, clearly articulated within their IEP, that it is the right track for them. Because as a young person completes their school journey, they too need to be recognized for what they’ve accomplished. It might be living skills. It might be ability to dress and clothe or toilet themselves.

That is success for a young person if that’s clearly articulated, not used as a default because that young person might be a little bit hard in the classroom, and let’s put them on an Evergreen and put them down the hallway. That is absolutely unacceptable. What we were seeing is that in our Indigenous population, the Evergreens were being used in excess, even where there weren’t individual education plans laid out.

Very intentionally under Patricia’s leadership, we’ve been working with school districts. We only had 120 out of the 655,000 receive the Evergreen last year. Lots of work. Patricia would still say that’s 120 too many. So we’re working on it.

I want to share a couple of stories with you around what it looks like for a young person in our school system, and a family’s journey.

I’d like you to meet Jessica. Jessica is struggling in school. She doesn’t have a diagnosis. She’s in grade 3, and she’s really struggling to learn. I could swap this out and put in Kennedy’s name, who is my daughter. That is about when we started to discover that she couldn’t read. There were other things happening for her, identified by the teachers and the school-based team, that they needed to do some further assessment on and they needed to look into it.

The assessments will confirm, as they work through those first-level assessments, that Jessica has a learning disability and will provide her with a diagnosis. Not unlike my daughter Kennedy. We understood that there was a disability, and what we later went on to uncover was it was a mental health diagnosis that was inhibiting her learning.

In Jessica’s case, she isn’t provided with an individual education plan because she isn’t diagnosed. There were some assessments done. But she’s getting extra supports in the classroom and getting about 30 minutes a week with a learning assistance teacher to bring up her reading levels.

[9:40 a.m.]

The district has a long list of students waiting for psychoeducational assessments. Jessica isn’t presenting and isn’t at the top of the list. She’s just having some struggles and needs some supports. As a parent, that’s a struggle — to understand your child needs extra supports and the school district to say: “We recognize that, and we want to help you. We also have a number of other kids that we need to try and get those supports in the right place.”

There is an option for families in our province to not wait. In my case, same as Jessica’s family, they went ahead and had a psycho-educational assessment done by a private provider. That is an assessment that is about $3,000 and can be upwards of $5,000, depending on how much the assessment is needed.

What Jessica found through that psych-ed assessment is that she did have a specific learning disorder, with an impairment in reading. That is through the diagnostic manual that the experts in the field use. She had a full-scale IQ in the superior range. Just let that settle for a minute. She’s struggling to read, but her IQ is in superior.

We need to understand what supports look like, then, for that young person. An individual education plan was put in place, outlining support, services and educational goals. The district then designates students, Jessica, in our learning disabilities category. Nothing really changes for Jessica because she’s getting the support she needs. But the school has more information, to provide different types of supports. It hasn’t triggered supplemental funding.

When we think about Sarah…. Sarah came into our school system with a diagnosis of autism through the B.C. Autism Assessment Network. We heard about that from our Ministry of Health colleagues. That’s something that the province and the school districts require for young people with autism — that they have the assessment done through the B.C. Autism Assessment Network. Those questions that you had around the additional 400 being done. These are our young people that we require in our school system to come through that network.

Sarah was diagnosed prior to entering the school system. Sarah’s autism diagnosis allowed the school district to designate her in the autism category right away and triggered additional funding into the district of supplemental funding over the block funding amount. An individual education plan was put into place. Again, it outlines the support services and educational goals for Sarah, working with her family.

How should services be delivered in schools for all families in our province? It’s really fundamentally around the question: does the school require additional supports? That question can be answered by talking to parents — parents know what might support their child — and teachers in the classroom, as well as the district learning teams.

What does that look like? Does this child need additional supports? Yes. There are services already embedded within the funding amount that goes out to school districts. If the child has a diagnosis — so following the left track there — they’re designated within our school system into one of those 12 categories we talked about, and that triggers supplemental funding to the district. Then the school districts receive the supplemental funding, and the services can continue, or enhanced services can be put into place.

If a young person does not have a diagnosis…. That’s where we do see the wait — for assessment and diagnosis. Once the assessment and diagnosis are done, the districts trigger a funding claim to the ministry, which is done three times a year, and then the district receives supplementary funding, and supports are then put into place, and services.

Services and supports are expected to continue even while a young person waits for an assessment. Many, many pockets of our province go over and above for this. Sometimes we hear in the news that that’s not the case.

What we’re hearing is what is happening for a family and a young person…. And this is what we’re hearing — a number of different ways: (1) directly into the ministry from families or (2) solidified through our independent panel of our funding model that has just occurred.

Walking through this flow chart, does the student require additional supports? Yes. The parents and student are informed that supports are coming. Is the student a potential level 1, 2 or 3 student? Those are the supplementary funding categories. Yes.

[9:45 a.m.]

Does the student already have a diagnosis? If yes, the designation happens, the supplementary funding is triggered, and it’s delivered out to school districts.

If no, and these are the ones that we hear about and that keep us up at night, the students or families are being told: “You don’t have a diagnosis, so we can’t put additional supports in place until that happens.” That is not the expectation in our province. But that is the reality, unfortunately, for some families.

Our expectation is that the money in the school system supports kids while they wait for additional diagnosis and medical information to help support that young person’s learning journey and what that translates to for learning needs in the classroom.

The Ministry of Education has undergone a funding model review. There was an independent panel assembled that has provided the ministry some recommendations. What the panel heard was that funding and service models are not understood by families. Many, many times families are told: “Go get your child diagnosed so that we can get supports in place.”

As a parent, my assumption would be, then, that the money that’s being triggered would go to my child, which is not the case in our system. It goes into the system. In my own daughter’s case, she just needs extra assessment time. She needs a private room to write her assessment, double the time that other kids get. She doesn’t need a lot of funding.

The other pieces that the panel heard were that the funding is targeted for the individual student, as the example I just gave; that having supplemental categories guarantees services; that the high-incidence — our students with learning disabilities or gifted, as an example — are unfunded, where we talked about how we had moved it into the block many years ago; and that there’s a lack of clarity for what the process is to determine what the services are and what the gaps are. The Ministry of Education has taken that report very seriously. There are a number of pieces of work that are underway.

The funding model review gave us a guiding document. Patricia is a co-chair on our inclusive education working group that has been set up to really understand how we increase equity and accountability for services in the education system. The working group is in place to give advice on, specifically, recommendation No. 6 within the panel’s report, which is to “create a new inclusive education supplement and provide it through two components: (1) a complex needs category and (2) a prevalence model.”

At the same time, we understand that funding isn’t going to fix things — or changing the way that the money gets out there. We fundamentally need to work on a new provincial policy that will support districts with a needs-based model instead of a medical model. It will help identify students’ needs by functional domain and outline the types of services and supports that should be in place for that young person.

We also need to reduce the misunderstanding that students need to be designated to receive supports and services. We know a broad range of students and their needs must be recognized and supported within our school system. So we’re looking at our policy work. We’re also looking at the transition between early learning, so our zero to five young people, and what that looks like when they leave the MCFD system into our school system, to make sure those transitions and supports are in place. We have a number of projects underway looking specifically at kindergarten transition.

As mentioned earlier, Patricia sits on a cross-government team that’s looking at wait times for psychoeducational assessments and how we, as a province, can look at this issue, instead of in our individual areas of responsibility.

That wraps up our presentation to the committee.

N. Simons (Chair): Well, I really want to thank you very much for that comprehensive overview. It’s a complicated subject, but we’re all learning quickly. I know that my colleagues on the committee will have some questions.

R. Singh: Thank you so much for that presentation. It’s really good to see the progressive moves that the Education Ministry is bringing in to help these kids. That’s really good to see.

[9:50 a.m.]

A question that I asked the MCFD yesterday, and that I’m hearing a lot in my constituency, is about the needs of the kids. We know the funding falls from $22,000 to $6,000 when the kid enters the school system. Most of it I know, and as you mentioned, you are giving, per child…. How much funding is going into the education system, which is wonderful.

What I’m hearing from the parents is the concern, the gaps that happen, especially when the school is not in session. I know different school districts have different educational programs throughout the summer for the kids. Are there also programs for the kids with special needs? Is there funding going in that direction?

P. Kovacs: The funding that’s provided by MCFD for that pre-K-to-12 system is to support the student’s development. When the students enter school age, that funding is provided by the education system, and it’s used primarily within the classroom, within the school setting.

There’s no additional funding that’s provided for outside supports and services through the education system. However, MCFD does continue to provide a portion of that funding for parents to use outside the education system to support students’ development.

R. Singh: My question is: when school is not in session, the programs that the school districts have, are there some programs that are catered to these special needs kids?

For example, I know my son used to go for English language classes during the summer. My daughter gets it too. She gets the option to go for those. If the kid has a special need and the parent wants to put them into those kinds of courses during the summer, would there be some assistance available for those kids?

P. Kovacs: Like financial assistance, or assistance to be accepted into the program?

R. Singh: Into the program.

P. Kovacs: I would think that that same philosophy — that all students are included and all students have a right to attend every program that’s particularly put on by a school — would flow through to those other programs and school-based teams and clubs and all of those things.

J. McCrea: Just to add to that, it would be based on the school district itself and the programs that would be offered, because the school district is the provider of services.

E. Ross: On page 4, you have a breakdown on a chart there that shows the number of students designated in exclusive education categories. It’s a provincewide breakdown.

Do you have a breakdown per town and, underneath that, a breakdown per school in terms of the same types of subjects here?

P. Kovacs: We have a breakdown by school district.

E. Ross: School district — you have that as well?

P. Kovacs: Yes. Not here, but we have it, yes. We can provide it.

E. Ross: Please. Thanks.

M. Stilwell (Deputy Chair): Thank you, Jennifer and Patricia, for your presentation and for your passion. I know that we see the world in the same light in many ways.

I’m just wondering, sort of in line with what Ellis is asking in regards to the breakdown of regional numbers. Do you have the numbers of students with special needs that are in the public school system versus the independent schools when we know that many of our independent schools are for deaf, blind or hard-of-hearing or specific autism channels? Do we have those number breakdowns as well?

J. McCrea: We do, and we can get that to you.

M. Stilwell (Deputy Chair): Perfect. Thank you.

L. Throness: Thank you for your very clear presentation.

I’ve wondered. How does a teacher or the school system get access to a medical diagnosis of a child? Is it through the parents only, or do they have some direct access to the medical records of that child?

P. Kovacs: It’s through the parents. The parents have their right to choose to disclose that information or not. But the school district has the right to designate a child in one of those categories for supplemental funding.

They are the ones that decide. Sometimes parents don’t necessarily want a child designated to the ministry. But if the school districts determine that they need this supplemental funding to provide those supports, they can choose to designate the child.

[9:55 a.m.]

L. Throness: That means that educational officials might designate a child without a medical diagnosis. I think of children in care, which we’re responsible for. Many of them come from very difficult situations. Sometimes there’s no contact with a parent. Sometimes access to medical records could be difficult through the parent.

P. Kovacs: They can’t designate a child in a category without a medical diagnosis. However, if they have a medical diagnosis that the parents have brought forward, then they can designate a child even though the parents may not want the child designated.

You’re right. We don’t have access to those medical records.

L. Throness: Okay. I wondered, with respect to the….

N. Simons (Chair): Can I just ask for clarification on that answer, if you don’t mind?

I think the question was whether or not a child, perhaps in care, attends a new school…. Will that school have access to that child’s medical record? I would suggest that if the state is the parent, yes. But if not, how is the school able to request the funding associated with that child’s particular needs if, in fact, there’s no diagnosis made available to them?

P. Kovacs: Sorry, to clarify. If they’re a child in care, you’re right. We would have the access because the state is the parent. But if the child is not a child in care and we don’t have medical records that the parents are willing to bring forward, then a school district wouldn’t have the necessary information to designate the child.

L. Throness: Just a couple of little, more factual questions. I’m wondering about your graph showing the number of students designated in inclusive education categories. What is the incidence of Indigenous children in those categories? Maybe we could get that in the future.

Finally, I had a parent who came to me and said that her son’s friend had a learning disability, was designated as such, and was not helped at all by the system and basically just sat there, and they just graduated him into the next grade every grade. He still didn’t know how to read, and he was in high school. So she pulled him out and home-schooled him and taught the kid how to read.

Is there any guarantee that special needs funding will flow to that child in the school system, or could it just go to the general kitty of the school?

J. McCrea: The funding does go to the school districts, and the school districts must use that funding to decide on how best to provide those supports and services. It doesn’t follow the individual student. So that’s just a clarification on our funding and how that flows.

To your point, the parent who wasn’t getting the services and supports, that is something within their school district that they need to address.

N. Simons (Chair): Thanks, Laurie. We’ll follow up.

E. Ross: I just want to clarify. Did I hear that there can be a designation made by the school against the parents’ wishes?

P. Kovacs: Yes. The school district has the right to designate the child to the Ministry of Education for the purpose of targeting those supplemental funds because they may need additional funds within their budget to provide the supports and services. It’s their responsibility to meet the needs of the child in the educational setting. So if they feel like they need those supplemental funds to do that, they have the right to designate the child. It’s a school district decision.

N. Simons (Chair): Just to clarify, I would presume that there would be no public identification of that child in any other way. Perhaps maybe on their file?

P. Kovacs: Maybe I’ll clarify the terms “diagnose” and “designate.” Diagnose is the medical diagnosis. Designating a child, in one of the ministry’s supplemental categories, is just identifying them in one of the categories. It’s not a diagnosis. It’s a designation.

J. McCrea: And it wouldn’t be for public, to your point.

E. Ross: We’re talking about the district’s rights. We’re also talking, in that same sentence, about parents’ rights. It seems to be a grey area.

Once the designation is made, is that the end of the story, that there’s no other avenue for the parent to address this decision going against their wishes?

P. Kovacs: They can. There’s a formal process that they can go through to appeal anything that they feel the school district or any decision the school district makes that they are not comfortable with or feel is infringing on the rights of themselves or their child. If you’re interested, we can provide you with that formal appeal process information as well.

[10:00 a.m.]

E. Ross: As well, could you provide the number of times this has come up as an issue in B.C.? I never knew this issue existed. I never knew this.

P. Kovacs: It’s not typically an issue, because school districts would rarely do that. They would rarely go against that family’s wish. Sometimes a family, on the other side, wants to have a designation, and the school district doesn’t feel like the child meets the criteria for a designation. It more often goes that way. In most situations, school districts are very respectful of the family’s wishes. Because those funds are not targeted funds, they’ll just use the funds that they have generated from all of the supplemental funding from the ministry, and they’ll provide those supports and services without designation. It’s very rare.

E. Ross: But there are documented accounts where some school districts have gone against parents’ wishes?

P. Kovacs: We don’t have any documented accounts. The Ministry of Education does not have any documented accounts. It’s just that they can do it.

N. Simons (Chair): Just to be clear, I don’t think that anyone in the school would necessarily notice if the school had designated a child as being in one of those categories. It’s just more of an administrative issue. I believe that those schools would hope for that funding in order to ensure that other children in the school are also getting the necessary support.

E. Ross: I’m aware. It’s just that the issue is the parents’ wishes versus the school district decision to override. That’s the issue.

R. Leonard: Thank you for your presentation. In the last thing that you were talking about…. We hear about the designations: “My kid needs to be designated. I can’t get funding.” Blah, blah, blah. You said that the intention is to move to needs-based from a medical model. I was hoping you could expand a little bit about that, around the issue of designations.

J. McCrea: I think what I want to start with — thank you for that question — is that there is always a place and a need for assessments. That is a fundamental piece. One of the pieces of work that the funding model working group is working through is: what would a needs-based model look like, supported by those assessments and medical diagnosis pieces? Right now it’s completely the inverse. That’s where the working group — made up of many, many education partners and parents — is working through that right now.

R. Leonard: This is just how you’re looking at the system, but then it’s going to have impacts, I assume, around the funding models as well.

J. McCrea: Well, that was the direction from the independent panel.

R. Leonard: Would you say…? If I may, just a last question. We’ve been looking at the three pots, the FASD, autism and — what’s the third one? — whatever. There are the three pots. There are a lot of kids that fall through the gaps if they don’t fit in any of those categories but have multiple challenges. Will a needs-based model help address those gaps?

P. Kovacs: We believe it will help address those gaps, because we are not requiring students to fit into one of those categories in order to receive services. We are looking, first, at the needs of the child in the educational setting. The information that we learn from the medical diagnosis is always part of the consideration. We’re always taking in that information. We’re looking first and foremost at: how do those needs translate into the learning environment? What supports and services do we need to put in place in order to ensure the child’s success in the learning environment?

N. Simons (Chair): I have a question about policy changes. Have there been any significant shifts in policy around how children are identified and funded in the public school system in the last year or two?

J. McCrea: That’s the work that’s currently underway right now.

N. Simons (Chair): Thank you very much. I really appreciate it. As the son of a special education teacher, I have a particular thank-you for your commitment to this subject and for your sharing of knowledge with us today. We appreciate your attendance here.

We’ll take a two-minute recess.

The committee recessed from 10:04 a.m. to 10:08 a.m.

[N. Simons in the chair.]

N. Simons (Chair): We’re back. We have the pleasure of meeting with Seonag Macrae from CLBC, who will be giving us some insight, probably around transition, around the extra supports that children with special needs require or benefit from as they transition to adulthood.

We just want to welcome you here and thank you for being here.

COMMUNITY LIVING B.C.

S. Macrae: Thanks for giving me the opportunity. CLBC is a Crown corporation. We report through the Ministry of Social Development and Poverty Reduction. Our focus is on individuals once they reach 19. So a lot of what I’ll say is about the transition period and the qualifications. Our mandate comes from the Community Living Authority Act and the Community Living Authority Regulation. That defines who we can support and what the eligibility requirements are, and all of that is defined through that.

[10:10 a.m.]

We do have two categories of individuals that we support. The first, and by far the largest, is of adults who have a label of having a developmental disability. The second one is adults who are diagnosed with fetal alcohol spectrum or autism spectrum who also have significant limitations in their adaptive functioning. That’s an important qualification, because it’s not everybody, by far. We refer to these as DD for developmental disability. And for some reason, the personal supports initiative — PSI, if you ever see that term — is those with fetal alcohol or autism spectrum.

To be eligible on the basis of a developmental disability, adults or youth must meet all three of the criteria that were set out in the Community Living Authority Act and regulation. The first of those is a significant impairment in their intellectual functioning, with either an IQ of 70 or below when tested by a qualifying practitioner, or if the IQ is slightly more than 70 and, if when they’re tested by a registered practitioner, the impairments in their adaptive functioning are so severe that their actual intellectual functioning would be comparable to that of a person who was 70 or less. That’s slightly new in that we don’t have a hard-and-fast 70 as a rule, but you do need to have that extra assessment that says that your adaptive functioning would be similar to those with less than 70.

The second criteria is that the impairment in their adaptive functioning that’s the main contributing factor to the diagnosis of intellectual disability is made in accordance with DSM-5. That’s new as well. We just recently moved to the DSM-5, so we use that as a standard.

Then, the final one is that the onset of this impairment needs to be before the age of 18. For example, someone who had a traumatic event after 18 that led to severe dysfunction would not qualify for CLBC supports. That would be the adult brain injury program.

To be eligible under the other category, the personal supports initiative, adults or youth must meet, again, the three criteria established by the act and regulation. The first one is that they don’t fit into meeting the criteria for a developmental disability. That would be the first assessment. If they don’t qualify for that, then the second criteria is that they have significant limitations in their adaptive functioning. There is an eligibility policy that defines which tests the individual would need to undergo, and their composite score would have to be at least three standard deviations below the norm on one of those defined tests in order to qualify.

The third is that they would have a diagnosis of either autism spectrum disorder — again, using the DSM-5 — by a registered practitioner or a medical practitioner or the fetal alcohol spectrum disorder, which is made in accordance with the “Fetal Alcohol Spectrum Disorder: Canadian Guidelines for Diagnosis” and, again, by a multidisciplinary team member, which could be a registered practitioner or a medical practitioner. They have to meet all three of those criteria.

As I mentioned, the key here is that by far the smaller part of our programming is in this fetal alcohol and autism spectrum. We really do support a very small number of individuals that carry that diagnosis, and it really is those who need significant help with the day-to-day tasks that they’re doing.

Each year we have about 1,000 individuals that transition to age 19 and who establish their eligibility for services through CLBC. That’s overall. At the end of fiscal 2018-19, we expect that about 980 youth turning 19 will have registered for services from CLBC. Of those, 810 would be in the developmental disability category and 170 through PSI. So that gives you…. That’s pretty standard. That doesn’t change over the years. The proportion is pretty consistent, as is the number of individuals we have transitioning with us. It stays fairly consistent within about a 5 percent range.

[10:15 a.m.]

If an individual is determined to be ineligible for CLBC, then our staff will refer them to other community programs or services that might be available to anyone and help them to identify that. As of February 2019, of 1,702 individuals who applied to CLBC in the ’18-19 fiscal year, 457 were deemed ineligible for CLBC services. That would be a category of individuals who, clearly, are seeking some level of support, who obviously need some level of support, but don’t fit within the criteria that are defined for us through our act. Of those who didn’t qualify, 384 of the 457 were ineligible under the DD stream, and the other 73 were ineligible under the PSI stream. Again, those numbers stay pretty consistent over the years.

Recently we made some changes to the eligibility criteria. That was when we moved from the diagnostic tool referred to as the DSM-IV to the DSM-5 tool. That was in 2018. We adopted the DSM-5 manual. We were late to the game in adopting that. Certainly, that was something that psychologists were using for quite some time. Because it required changes to our regulations, it took a little bit longer than we had hoped.

Probably the most significant change in moving from DSM-IV to DSM-5 is the label that was previously used in DSM-IV, “mental retardation,” which is quite offensive. It was switched. That was probably, for us, the biggest driving factor in wanting to change that. The terminology now used is “intellectual disability.”

As I said, we did have to get some changes to our legislation in order to adopt that. We did get the regulations amended effective March 31, 2018.

Under the community living authority regulation and eligibility policy, we do continue to accept the DSM-IV assessments. If someone has already had a DSM-IV assessment, we don’t require that they go and get that switched, and no one that was previously qualified under DSM-IV would not now qualify. So if anything, the DSM-5 actually opens the door to a few more individuals who may not have qualified under DSM-IV.

The DSM-5 also, in the manual, removes the age-of-onset criteria. However, we did retain that in our regulations. While the DSM-5 doesn’t identify an age of onset, we do require the age of onset within our regulations. We maintain that it has to have occurred before 18. That has caused some issue for some of the psychologists doing assessments. Again, it’s an indication of a gap in services for those that don’t fit into the CLBC eligibility criteria.

The DSM-5 also includes some minor changes in the way that adaptive functioning is considered. There is somewhat more flexibility in terms of how that is designated that psychologists can use. Because there is that bit more flexibility, we have established a DSM-5 reconsideration and review process for individuals who might meet DSM-5 but would not have met the DSM-IV. So if someone was deemed ineligible under DSM-IV, they can come back to CLBC and, under the DSM-5 criteria, see if they’re now eligible. We have put that in place.

We do have some overlapping. We have a lot of overlapping, obviously, with some of the other ministries that you either have heard from or will hear from. Eligibility for…. Ministry of Child and Family is certainly the biggest other ministry that we overlap with on a regular basis.

[10:20 a.m.]

They have various programs and services that have much broader eligibility than CLBC. So for some individuals, if they’ve had some supports and services through MCFD, as they transition, some of those funded supports won’t be available through CLBC because of our more somewhat rigid eligibility criteria.

Like MCFD, persons with disabilities who are on the disability assistance through the Ministry of Social Development and Poverty Reduction…. The PWD is available to a far, far wider range of individuals than who would qualify for CLBC. However, everybody that qualifies for CLBC would qualify for PWD. We’ve changed some of the process that people had to go through, so now if you’re eligible for CLBC, you’re automatically eligible for PWD. You don’t need to go through that added hoop. That was recently changed in the last, I think, three years.

To determine eligibility, an individual does need to be assessed by a qualified psychologist with documentation that the criteria have been met. Then the psychologist’s documents are provided to CLBC staff, who then confirm their eligibility for CLBC. There may be back-and-forth with the psychologist if there is some question, but for the most part, that happens quite smoothly.

We also have some operating agreements related to our transitions, because we are one of nine government agencies and ministries involved in planning supports and services for young people. For example, CLBC and other ministries jointly developed a cross-ministry transition planning protocol for youth with special needs in 2009 to help them access existing resources and supports and to ensure that a somewhat more coordinated transition planning process occurs for youth with special needs and their families. We have done some work, and we continue to do work with other ministries to try to better coordinate the whole transition process.

Out of that protocol agreement, CLBC and MCFD developed, specifically, a transitioning youth operating agree­ment. That outlines our respective roles, responsibilities, notification protocols — all of those kinds of things. I have to say that that has resulted in things working much more smoothly than perhaps would have been the case eight or 10 years ago. CLBC and MCFD have reviewed this operating agreement very recently, and that report and recommendations from the report should be jointly approved in the near future. That will lead to some revisions in this operating agreement, based on lessons learned and trying to improve it even further.

Our staff liaise with MCFD staff and meet with the youth that will be transitioning — as young, sometimes, as 16 years old. We do try to get some advanced planning with youth. We try to get the best understanding we can of who is coming into the system and who might be seeking eligibility. We can take a look at what documentation for eligibility they have and help to start planning for adulthood. We also do work with the delegated Aboriginal agencies to do this advanced planning, and we have agreements with the delegated Aboriginal agencies as well.

For individuals who have undiagnosed FASD, who are then not eligible for CLBC services under the developmental disability stream, we do have an agreement with the Provincial Health Services Authority that they will fund those FASD assessments. So if an individual does need one, then we do have that agreement that the health authority will fund that so that an individual can get it.

In terms of the Ministry of Education, the transition planning protocol says that at age 16, schools are responsible for completing the school assessments if required. At age 17 to 18, schools are responsible for completing the school assessments and noting if any assessments are outdated or need to be redone. So we do have, as part of our transition policy, the responsibility with the schools.

[10:25 a.m.]

The operating agreement between MCFD, the delegated Aboriginal agencies and CLBC also sets out MCFD’s responsibilities to assess youth receiving services, the youth in out-of-care arrangements and youth-in-care agreements. They indicate that MCFD may provide funding to cover the cost of a psychological assessment when a family can’t purchase one, when it’s within the regional MCFD budget capacity to do so and when an assessment has not been conducted within the school system. So for those that don’t get it within a school system, there is capacity ability for MCFD to do that.

The operating agreement also defines MCFD’s responsibilities to youth in care by court order. Where eligibility information is not already available, then MCFD will arrange the funding for a psychological assessment when it’s required for CLBC eligibility. And then Work B.C., as well, will provide psycho-vocational assessments for the purposes of employment. CLBC has a strong focus on employment. We work very closely with Work B.C. for that.

In terms of the Ministry of Health, they do provide psychological assessments, as required, in hospital settings. They fund the ASD assessments for children and youth up to 18 through the B.C. Autism Assessment Network and fund FASD assessments for children and youth. Then, as mentioned, through an agreement we have with the PHSA, if a developmental disability assessment for CLBC confirms that an adult meets the CLBC adaptive functioning criteria, then the ministry would fund the FASD assessment.

We don’t fund the assessments. Some people have asked us that. We don’t do that, but there are those agreements that ensure that there are other avenues to get that funding.

We also hold some contracts with psychologists in each of our regions. This is primarily for conducting reviews or reassessments if there is an issue with an assessment that we get and we need more information to make sure that the eligibility decisions are based on complete information and accurate assessment information.

We do have some contracts with psychologists, but it’s more for gathering more information as opposed to doing the initial assessment. This is most often required when people don’t transition to CLBC through one of our government partners but maybe apply for eligibility. They’ve gone to a private assessor or something, and they applied that way. That’s the most common reason why we would have to have more information or another assessment.

In terms of gaps in the assessment framework that we’ve identified, we find that sometimes the assessments done for school purposes — like if it’s just what you just heard, for the learning purposes — are not always sufficient for what we require for ongoing supports.

For example, if someone has autism and does not fit within the developmental disability cognitive range, then they may never have had one of the adaptive assessments that they’re required to have to indicate that they’re the three standard deviations below norm. That would be because that’s not required for school purposes. That sometimes is a gap that we experience.

Another gap is that assessments from other government partners may not be done, especially now with the flexibility in the DSM-5, with the degree of documentation required so that we can understand if someone meets our eligibility for CLBC. To remedy this, we have developed requirements for our contracted psychologists. We make it very clear to them what is required and what we need in the form of assessments and documentation assessment reports so that they have that. We make that available to them.

When we switched over to DSM-5, we had a lot of conversations and meetings. We consulted with psychologists. We have been using this tool with psychologists around the province so that we can help them understand better what we need.

The third gap. There is a robust system in place for children to have the ASD assessments, so the vast majority of the autism assessments are done before people turn 19. But there are some people who, for a variety of reasons, are not assessed in childhood — whether families choose to not have that done or whatever — and there’s no real mechanism in place in the province to fund the ASD assessments.

[10:30 a.m.]

While we do have that agreement with Health for the FASD, we don’t have the same one for autism once someone’s an adult. So that is a bit of a gap for us.

One of the things that you outlined in the agenda for this committee was…. You were interested in funding decisions for services. Once we have deemed that someone is eligible for CLBC, one of our facilitators provides information. We have just done a major overhaul to our planning and information supports. That’s, again, as early as age 16, where we introduce people to who we are, what we’re able to do, what kinds of supports and what the processes are that they can expect to experience. We have a session that we call the “Real Deal,” where we make sure that people have a realistic expectation of what we’re really able to do and what we’re not able to do and what we are able to cover and not.

We do spend time exploring, as well, what other services are in the community. As the previous speaker spoke about, everybody should have access to everything that anybody is accessing in the community. There are lots of community supports and programs, and sometimes people just need help understanding what is available, help getting access to them. So we do offer that as well.

Our planning is all individualized. Our funding is all individualized. We do spend some time understanding what an individual’s requirements might be, what their goals are and what they might be interested in and doing as much planning in advance as we can. Once somebody has had this information and thought about what they’re interested in, then they will work with us to submit a request for service. Based on what we’re able to support, they will indicate to us what types of services they would be hoping to get.

We maintain that on a list, and each year, as we understand what funding we are going to get from government, we weigh up the request with urgency of need, what other supports and services are available around them and how much funding we have available, and we assign funding accordingly. It is based on not a wait-list — as in if you’ve been on the wait-list longest, you’re next up in a queue — but, rather, on urgency of need, significance of the intellectual disability and how much support someone might need.

We do keep track, though, of individuals that we’re not able to fund for everything they ask. We keep a record of that on our request-for-service list. As more funding may come available, then we may be able to offer something more. We do have a set of tools that we use to help make fair and consistent decisions about the types and amounts of services that we’re able to offer.

One of the challenges that I think is frustrating for fami­lies and individuals is that while we do this planning well in advance, as you know, we don’t know until about February what we’re going to get for the next year. We can’t commit to funding two years in advance and say, “For sure we’re going to be able to offer this to you,” because we don’t know what our funding will be year over year. We don’t know how many individuals exactly are going to be coming to us and what the urgency of need will be at the time.

So while we give as much information up front as we can and do as much advanced planning as we can so that we understand what people are hoping for, we can’t commit that until, really, the youth is transitioning and turning 19.

We fully appreciate the frustration that creates for families as well as for our own staff. We are very organized and try and get the decisions out as soon as we can, once we understand fully what our funding will be for the upcoming year. We do, however, offer two things to everybody who asks. One is that we have a minimum level of respite so that families can get some respite. No matter what, if you transition, you’re eligible. If you wish to have it, then there is respite funding available to you.

[10:35 a.m.]

The other thing that is new — and we are still building our network of providers so that we can offer this completely — is that we are moving towards what we call employment for all. So if anyone comes to us asking for supports around employment, that is automatically granted. We have the funding set aside so that we can do that. However, one of our challenges now is building up the network of providers.

We have been shifting more and more people into the employment stream. This is just common sense. I think, in the past, the challenge was that sometimes…. People with extreme needs and urgency always absorb all of the funding. It’s similar to preventative health care. There’s never funding for that. We have earmarked funding for employment.

The worst thing that happens is that someone graduates from school, and we can’t get them into employment or at least an employment stream where they’re preparing themselves for employment. Then they sit on the couch and play video games and lose any kind of development that they’ve gained. So we are doing that. We’re moving quickly into that, as I said, and we’re actively getting support from service providers to make sure that we can get people employed.

That is the latest effort that we did. Then, as I said, as budgets get reviewed and if we have access to more funding, we release more money throughout the year as we’re able to do that.

That’s how it works around eligibility and funding for CLBC.

N. Simons (Chair): Really appreciate that presentation. Full of information that we can go and review in Hansard when we need to. Thank you very much, Seonag.

My fellow committee members may have questions. Laurie does. We’ll start with Laurie.

L. Throness: All right. Thank you for your presentation. CLBC is really important in my community, so thank you for what you do.

Waiting times for eligibility assessment. What is that like?

S. Macrae: You mean once someone is eligible?

L. Throness: No.

S. Macrae: No, sorry. Once someone has had their assessment and then they’re coming to CLBC?

L. Throness: To be assessed for eligibility for CLBC’s programs and services. What is the waiting time for that?

S. Macrae: I don’t have data by region, but it is generally…. It will depend on when someone comes to us. If someone comes to us at the age of 16, it might take longer to get the eligibility assessment completed. If someone comes to us at the age of 18, or anyone that’s an adult, the assessment is within a month or two months.

The challenge with some people feeling that they’re waiting is that they are younger, so we have somewhat more time to be able to complete the eligibility if the staff are falling behind. Once you’re 19 or 18 and waiting, it’s pretty immediate.

L. Throness: That’s unusual, and that’s good.

You talked about a transition planning protocol. Could we get a copy of that protocol — a transition planning protocol between different ministries? I would be interested in seeing that.

S. Macrae: Oh, yeah.

L. Throness: How many children in the care of MCFD transition to CLBC? Is that something that you would have a handle on?

S. Macrae: I don’t have it, but I can send it to you. The number of children in care is not a significant portion of our population. All children in care that transition automatically transition into services. That is one population that we have an agreement with MCFD that we do a complete transition over. Often we transition over, and then we sort out what they really need in adulthood after the fact.

L. Throness: One final question. When a person is granted services and supports through CLBC, is that reviewed every year, or is that an ongoing thing? It’s just assumed to be continuing.

S. Macrae: When someone gets supports from CLBC, it’s pretty much for a lifetime, other than things like employment, where we hope they get a job, and they don’t need it anymore. That is another reason why we’re really pleased that we’re able to offer more employment.

The review would happen if someone’s needs change. In a very rare case, sometimes we will front-end-load additional supports for someone because they need some extra stability. I would say that probably in the FASD, the PSI category, that happens more often. Then once they’re settled into supports, sometimes we can back off on some of the paid supports for an individual. That happens in the very rare minority of the time.

[10:40 a.m.]

For the most part, it’s that someone’s needs change. Either they’re aging or their family situation changes. Their life situation changes, and they need more support. We will do a new assessment, and that’s where individuals may get additional supports later.

N. Simons (Chair): I have a question. Is Community Living B.C. still using the guide to support allocation, the GSA, as eligibility?

S. Macrae: Yes. It’s a challenge. We’ve looked at all different tools, and there is no one perfect tool. The guide to support is really a guide, so it’s not a….

N. Simons (Chair): It’s not as prescriptive?

S. Macrae: Yeah, it’s not prescriptive. It’s really to give our staff some form of a guide to get an understanding, when they’re working with families, around what types of supports might be most appropriate and how much somebody might need.

N. Simons (Chair): I have another question, as long as my fellow members don’t have any. The qualifications for the employment support workers — what are they expected to have as qualifications?

S. Macrae: That’s not my area of expertise. There is a certificate that they’re supposed to have. We have been working, actually, with CSSEA in looking at better defining that category of worker and looking at the pay scale for, certainly, the unionized service workers to make sure that there is a category there and that we can expect a similar level of qualification across the board. That’s some of the work that we’re doing right now. As we expand the employment, we’re making sure that we tighten up on that.

N. Simons (Chair): Laurie has another question.

L. Throness: I do have one more that occurred to me. Do CLBC clients each have a caseworker or a social worker that they deal with?

S. Macrae: No. CLBC funds the supports, right? Once an individual has gone through that eligibility and the assessment and we hook them up with a service provider, then the service provider really is the key contact for that individual and the family. That’s who sees them all the time; that’s who understands. Often, then, the prime relationship is between us and the service provider. In the initial phases, as someone is coming to CLBC for eligibility, we have what we call facilitators, most of whom are social workers. But that’s not really a case management role.

In some cases, for individuals that are incredibly complex, we do have an assigned facilitator who will work closely with the service provider. But the key relationship there, on the ongoing kind of support, is with the service provider.

N. Simons (Chair): Can I ask: is CLBC doing any direct service provision at all?

S. Macrae: The only direct service provision we do is in our provincial assessment centre. It’s kind of an anomaly.

When CLBC transitioned from MCFD, there was this assessment. That’s an in-patient assessment for individuals with developmental disabilities who also have a mental health diagnosis. They need an in-patient assessment to stabilize their drugs, their medication regime, to get a more firm diagnosis, treatment plan — that kind of thing. It’s quite unusual. We’re actually in conversations with the Provincial Health Authority right now, because we really think that probably that’s a better fit.

N. Simons (Chair): Committee members, we’ve heard a lot of information today.

I just want to say, for those of you who are not aware…. Seonag, this is your second-to-last day. I’d like to just congratulate you on your upcoming retirement and thank you for your work for the public in these last five years with Community Living B.C. and for the expertise you brought to that role. I just want to say, on behalf of the committee, thank you very much for your service, and thank you for being here today.

S. Macrae: Thank you.

N. Simons (Chair): Let’s have a 1½ minute recess. I think we have a short number of things to conclude. Am I right, or we can adjourn? We don’t need to recess. We’ll just continue as Seonag packs up.

Committee members, we have item No. 4, any other business. At this point, do any committee members have any questions about upcoming travel?

I want to clarify. The questions that were asked that require follow-up from any of the witnesses today will be pursued by the Clerk’s office for those. The direct communication will be there. That information — on questions that Laurie asked and others asked — will come to us through the Clerk’s office. Thank you for the really good questions and for everyone’s attendance here today.

With that, I’ll entertain a motion to adjourn.

Motion approved.

N. Simons (Chair): It seems to be unanimous.

The committee adjourned at 10:45 a.m.