The committee met at 3:35 p.m.

[N. Simons in the chair.]

Committee Report to the House

ANNUAL REPORT 2018-19

N. Simons (Chair): Welcome to the Select Standing Committee on Children and Youth. We are convened in Prince George to conduct public hearings into our special project.

Prior to our first witness this afternoon, we will deliberate on the select standing committee’s annual report 2018-19 so that we are able, potentially, to table it in the Legislature next week during our final week of the spring session.

Without further ado, I ask committee members if you have any comments or questions about the report or if you think it needs to be rewritten. I believe I saw a couple of comments that were submitted to the Clerk’s office. There weren’t any substantive changes, as far as I know.

M. Stilwell (Deputy Chair): I just want to confirm that all the changes that were sent via email — there was Laurie and myself, and, I think, Nick you had some as well — have been incorporated and that’s what we’re seeing here today.

J. Arril (Committee Clerk): Yes, they have all been incorporated. They’re just not highlighted because they didn’t change the substance of the text. So yes, they’ve all been incorporated.

R. Glumac: Sorry, I missed this when this came out before, so I’m just trying to read through it quickly now.

I’m trying to remember. I remember we had a committee meeting where we had the ministry there. The ministry had some recommendations, and we felt, as a committee, that they didn’t go far enough. I remember the question being asked: “Can you come back with a plan to actually make some changes on a faster timeline than what is being proposed?” They said that they will commit to do that. But I’m not sure. Is that captured in here?

N. Simons (Chair): I don’t actually remember seeing it referenced.

R. Glumac: I would have to look at Hansard to see which report that was. I think it was….

J. Arril (Committee Clerk): I believe it’s on page 6. It’s with respect to the Promoting Access to Breastfeeding in Child Welfare Matters report, on page 6, under the section with respect to committee inquiry, the third paragraph down. It just talks about the ministry’s action plan, focused on reviewing policies and guidelines rather than implementation. Is that what you were thinking of?

R. Glumac: Yeah, but it wasn’t about access to breastfeeding. It was about a broader topic than that. I’d have to look it up in Hansard.

N. Simons (Chair): We can discuss other issues as Rick is doing his review of Hansard notes from previous committee meetings. I didn’t anticipate too many substantive changes. But if Rick….

Do other members remember that particular presentation when, perhaps, we were looking at wondering why certain deliverables…? The ministry was determining what to measure, in terms of successes or not — their annual service plan. I believe it was in that meeting, where there was a suggestion that we were seeing the same results, ongoing same results, and why we were satisfied that that particular result didn’t get better. But I don’t remember the subject itself.

R. Leonard: It’s not ringing a bell at all.

[3:40 p.m.]

R. Singh: I know when we were…. Were we contemplating which study to do? Was that where it was? There were a lot of options we were discussing. Then we also discussed that we don’t want to repeat what the ministry is already doing. Then it had something to do with Indigenous children. I think we discussed a lot about that. Was that what you were talking over?

J. Arril (Committee Clerk): Walking through this report, if I may — that may be of assistance. It summarizes the committee’s activities, outside of any discussions with respect to the special project — the review of the representative’s 2017-18 Annual Report and 2018-19 to 2019-20 Service Plan. The ministry would not have been present with respect to that.

The next one was Promoting Access to Breastfeeding in Child Welfare Matters. This was a joint report, so both the ministry and the representative were present for that report. The other report was Time to Listen: Youth Voices on Substance Use. Again, the ministry would not have been present at that time. Then the last one was Alone and Afraid: Lessons Learned from the Ordeal of a Child with Special Needs and His Family. This was the same meeting where the committee started their work on the special project.

First there was the review of the report, which the ministry was present for but didn’t speak to. Then later, they presented, to the committee, a general overview of children and youth with special needs, as part of the special project piece. That would be captured in the next year’s report — more specifically, the special project report. The only time I can recall the ministry being present, with respect to the topics covered in this report, is for the report on breastfeeding.

R. Glumac: Well, since I don’t have the information in front of me….

N. Simons (Chair): May I just say that nothing precludes us from looking at the comments that you’re referring to, Rick, and seeing how we can maybe address them, regardless of whether they get a mention in the report itself. I think we can expect advice and information from the ministry. We don’t really ask them what they’re going to do to fix a particular issue. I’d say that together we’ll try to find out what that reference was for. I wouldn’t necessarily feel that would have to be in an annual report. That’s my comment. Are you prepared, with us, to continue?

R. Glumac: Uh-huh.

N. Simons (Chair): Let’s have a move to adopt the report.

R. Leonard: I move to adopt the report.

[That the Select Standing Committee on Children and Youth approve and adopt the Annual Report 2018-19 as presented today.]

N. Simons (Chair): Seconded by Laurie.

J. Arril (Committee Clerk): One other motion, please — that would be for the Chair to present the report to the Legislative Assembly at the earliest opportunity.

N. Simons (Chair): I have a motion that the Chair will present the report to the Legislature at the earliest opportunity.

R. Leonard: Maybe the Deputy Chair can move that.

M. Stilwell (Deputy Chair): I move:

[That the Chair of the Select Standing Committee on Children and Youth present the Committee’s Annual Report 2018-19 to the Legislative Assembly at the earliest available opportunity.]

N. Simons (Chair): Do we need to vote on those?

J. Arril (Committee Clerk): Yes, please. First one.

N. Simons (Chair): On the first motion that we accept the report.

Motion approved.

N. Simons (Chair): On the second motion that we present it at the earliest opportunity.

Motion approved.

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

I will call a recess.

The committee recessed from 3:44 p.m. to 3:48 p.m.

[N. Simons in the chair.]

N. Simons (Chair): Good afternoon, Members. Good afternoon, guests, visitors and all those who may be listening, as we discuss an important topic. Perhaps it’s about time that legislators hear directly from people in communities about the services. We do hear from people in our constituencies when they have specific issues with a service provider or with a ministry decision, but I think it’s good for us to have an opportunity to hear from the public together.

I’m Nicholas Simons, and I’m the MLA for Powell River–Sunshine Coast. I’m the Chair of the Select Standing Committee on Children and Youth.

We’re really pleased to be here in Prince George and recognize that our meeting is taking place on the traditional territory of the Lheidli T’enneh people.

On behalf of the committee, I’d like to thank everyone who’s able to take the time and meet with us today. We recognize that families of children with special needs and those working in the sector face a lot of pressures and challenges. We appreciate and count on your willingness to provide us with information. We’d also like to acknowledge and extend our appreciation to all those in the sector.

[3:50 p.m.]

Our committee is made up of MLAs from all parties, and our role is defined as, in part, to raise awareness and understanding of the B.C. child and youth–serving system among legislators and among the general population. To that end, we’re undertaking a project on children and youth with neurodiverse special needs, including those with autism, FASD and developmental delay.

We began this project by hearing from the Ministry of Children and Family Development, the Ministry of Health and the Ministry of Education to learn about their supports and services as they’re currently structured.

We’ve just arrived from another public hearing in Fort St. John. This is our second day of public hearings. We’re very pleased to be here.

I should note for those interested that we will continue to accept submissions until June 7. Anyone interested can look at the legislative website for more information, under Parliamentary Committees. We will carefully consider all the input we receive, and we will use it to make recommendations to the Legislative Assembly in a report that will be released in the fall.

Each of our registered speakers has ten minutes to speak, followed by five minutes for questions. Today’s meeting is being recorded and transcribed, and all our audio is also being broadcast live.

Without further ado, I’ll ask committee members and colleagues here to introduce themselves, starting with Teresa Wat.

T. Wat: Hi. I’m Teresa Wat, MLA for Richmond North Centre.

L. Throness: I’m Laurie Throness from Chilliwack-Kent.

M. Stilwell (Deputy Chair): Michelle Stilwell, MLA for Parksville-Qualicum, Deputy Chair of the select standing committee.

R. Glumac: Rick Glumac, MLA for Port Moody–Coquitlam.

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

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

N. Simons (Chair): We’re also joined by Jennifer Arril, who is from the Clerk of Committees office, and Stephanie Raymond, who is our bouncer. She’s from the Clerk of Committees office too. She helps us stay focused and on track.

I’d also like to acknowledge the people from Hansard, who jot down what we say: Amanda Heffelfinger and Simon DeLaat and all the colleagues back in Victoria.

Without further ado, it’s my pleasure to welcome our first two witnesses of this afternoon. From the Quesnel and District Child Development Centre, it’s Lynn Mathiesen, and from the Bulkley Valley Child Development Centre, we have Kerri Bassett.

Without any more from me, thank you for being here.

Presentations on Children and Youth
with Neurodiverse Special Needs

QUESNEL AND DISTRICT
CHILD DEVELOPMENT CENTRE,
BULKLEY VALLEY
CHILD DEVELOPMENT CENTRE,
CHILD DEVELOPMENT CENTRE OF
PRINCE GEORGE AND DISTRICT

L. Mathiesen: I just wish to acknowledge that we are also presenting today on behalf of the Child Development Centre of Prince George and District. Unfortunately, Darrell was unable to join us today because he’s not well.

We also want to acknowledge that we are also members of the British Columbia Association of Child Development and Intervention, BCACDI, and we support their submission to your committee as well.

We really appreciate this opportunity to provide input to the committee on strengthening our systems of care for children and youth with developmental delays or diagnosed disabilities, and their families, in our province. We have also been participating in a number of various reviews, surveys, questionnaires and focus groups that seem to be happening sort of simultaneously right now, facilitated by MCFD.

Some statistical information. In Quesnel, there are 481 active children on our caseload, with 198 on a wait-list. In Prince George, there are 823 active children, with 407 on a wait-list. In the Nechako Lakes, Lakes District, Bulkley Valley and Hazeltons, there are 832 active children, with 135 on a wait-list.

As an example of how this impacts community need, the Bulkley Valley CDC’s infant development program caseload has escalated to support the acquisition of another full-time equivalent employee, but no additional funding has been allocated to support that zero-to three-year-old population.

We want you to appreciate where our referrals come from because it reflects the diverse needs of the children that we serve. These referrals include: families, B.C. Children’s Hospital, Sunny Hill Health Centre, regional hospitals, special care units, pediatricians, family physicians, public health nurses, social workers, early childhood educators and many, many more.

Child development centres are hubs of expertise in general development, as well as the providers of the specialized services needed by children and youth.

[3:55 p.m.]

CDCs offer a wide spectrum of supported services and promote integrated models of service delivery. The reason CDCs are here after 40 or more years, despite chronic underfunding to our sector, is because we have learned to be flexible and adaptable, and we are very good at what we do, which is offering high-quality, accountable services in an economical way. As accredited agencies, meaning we are required to meet a very high standard of care, we can provide you with accurate, real-time information about the children and families who are coming to us every day with increasing complexities and vulnerabilities.

We have also been able to develop strong community partnerships geared towards a common goal of promoting healthy children and youth as well as healthy families. Our role in northern communities is particularly critical in addressing the barriers to service access that families in our rural and remote regions would otherwise experience if we weren’t here.

What we need going forward is a formula that promotes cross-ministerial collaboration, transparency in the decision-making process and a true path to reducing wait-lists for specialized services.

Specific to the question of the provincially mandated assessment and eligibility services, a family’s current journey for an assessment can consist largely of frustration and disconnection amongst the various child- and family–serving systems, limited psychologists and pediatricians, having to travel to urban centres, the financial burdens that that brings and all of the additional stress.

A family’s journey, once an assessment is done, can consist of getting incomplete information, as diagnostic assessments may not include functional assessment; a disconnection between the streams of service delivery and eligibility criteria — for example, the disconnect between the children and youths with special needs stream and the Community Living B.C. eligibility stream; and then needing further system coordination and navigation and assessment regardless of the outcome, if they’re eligible or not.

Our CDC experience with the assessment process consists of assuming increased responsibility to support families with navigating the diagnostic and service system pre- and post-assessment — again, regardless of the outcome.

Specific to the question of the CDC way of doing assessment and eligibility for our early intervention programs and services, this is another path of assessment and eligibility. It is the work of the child development centres to provide for all children whose families are concerned about the development. That is the assessment of function and needs in specific developmental domains. That’s a different process than a diagnostic assessment.

All of the foundational services — such as infant development, supported child development and the therapies — conduct assessments to determine a child’s strengths and challenges in areas such as communication, motor skill, social-emotional functioning and, from there, develop a suite of services to meet those needs. These are the services that our contracts with MCFD call on us to provide at no cost to families.

The major problem here is that these programs are woefully underfunded, especially in the therapies, and wait-lists are very long. Families are unhappy with the diluted services that they do get. Staff are overwhelmed and exhausted, leading to burnout and retention issues.

This time of year is very difficult for therapy staff, in particular, because they are writing letters of discharge to families whose children have aged out of the programs without ever having received services. A child referred for speech therapy two years ago will enter kindergarten without the benefit of a service that has been demonstrated to improve success in school.

I am an SLP by training. I remember back in the day when I had a caseload of 25, and I was able to see children two to three times a week. Children actually made progress on goals back then. Children with similar needs now are seen once or twice a month, if that. The SLP at my agency has 115 children on her wait-list.

What we’re also seeing is the increased need for family support and navigation as well as behaviour support within our contracts. We’re concerned about the divided system of assessment and eligibility to programs that provide individual funding versus assessment of function and need.

[4:00 p.m.]

It provides access. It provides funding for those who are privileged enough to possess the skills to enter the system, persist through the barriers, get a diagnosis and manage the funds to find skilled professionals, often in the much more costly service delivery model of private practice.

That’s great for them. But for all the other families whose children may have speech delays or an intellectual disability or a coordination disorder or delays related to socioeconomic realities and trauma…. They’re also waiting for an assessment. If they ever get one, the end of that rainbow is then to wait for publicly funded intervention services because there aren’t enough of those.

Recommendations that we have are to develop a long-term vision from our government to integrate our services of care, to streamline the model of early intervention and support and follow up from birth to 19 years of age, to re-examine the eligibility requirements and process for CYSN and the transitions into CLBC programs in adulthood.

Work with Advanced Education to increase seats for physiotherapy, psychology, occupational therapy, speech language pathology, as well as therapy assistance. Ensure that CDC teams have the full complement of service providers, including supported child development, infant development, all of the therapy — speech, OT and physio — family services, key worker and behavioural consultants. Offer recruitment and retention incentives for pediatric therapists in the northern rural communities.

Here’s our final suggestion. Charge the experts in child development — the provincial child development centres who have, for decades, delivered effective and efficient services — with the responsibility to have a bigger voice in the development and management of an integrated system of service delivery that is equitable for all, not just those who have a specific diagnosis.

N. Simons (Chair): Wow. Very well and succinctly put. You had 36 seconds left. I really appreciate those comments, and I’ll start by seeing if there are questions.

Laurie has a question.

L. Throness: I have several questions, Chair, if that’s all right, but they’ll be quick.

N. Simons (Chair): We’ll see.

L. Throness: One of the most notable aspects of your presentation was the waiting lists, which are long and significant. I thought I would just explore the waiting list, because I haven’t done that in our hearings yet.

Can a parent put a child on more than one waiting list at more than one CDC? For instance, if you have a child that needs child care, you might put them on more than one waiting list for a provider. Can you do that for a child at a CDC?

K. Bassett: We provide services within our geographical area, as per our contract. So no, if they are looking at receiving services within their home community, then they’ll be on our wait-list.

There have been times when they have sought other intervention services, like pediatricians, psychologists, outside of their community area. But we haven’t really experienced…. We’ve had phone calls about that, but if they come in to the geographical area, we will serve them, yes.

L. Throness: So that’s not an issue.

When you put a child on a waiting list, is that at the instigation of the parent who decides that that child needs services? Or do you decide to put that person on a waiting list? For instance, would you ever say to a child that this child doesn’t need care and should not be on our waiting list?

K. Bassett: I don’t think that’s ever come up. Lynn, do you think…?

L. Mathiesen: I think we would if we’ve gone through a rigorous intake process, which we do in Quesnel. Every family and child meets an intake worker, who then explores the issues and concerns with the parent and then makes a decision.

Yes, there are some children for whom we just need to reassure the parents that they’re actually doing okay, and they’re fine and whatnot, and they don’t need any kind of gateway to specialized services. But if the parent persists in wanting to pursue an assessment, we’re not the total gatekeepers of that either, and because our services are family centred, we would respect the wishes of the parent.

L. Throness: Okay.

My final question would be about triage. In the medical system, people are triaged in waiting lists so that the ones who have the most urgent needs get seen first. For instance, in Quesnel, where there are 198 children on the waiting list, is the 198th child the least needy child?

K. Bassett: Well, as Lynn just alluded to, through the intake process…. We have some protocol and process that we’ll do an intake within a couple of months of that referral coming in, and at that point, we will determine their eligibility for our services, and we will triage. So we have policy and procedures around that piece.

[4:05 p.m.]

L. Mathiesen: We do have prioritization guidelines that say that the most urgent situations are put ahead on the waiting list. If you have a child who perhaps has a feeding and swallowing problem that can be life-threatening, we’re not waiting for that child. But if we have a four-year-old who is maybe in-toeing, maybe that child will be prioritized lower down on the list. Each of our programs does have very clearly outlined guidelines for how we make those decisions.

N. Simons (Chair): I guess it would be fair to say that all of the children, the 198, have perhaps a need that would be helped if addressed early, so they are all critical and crucial for that.

K. Bassett: Absolutely. Just to follow up on that, this time of year we often get a lot of referrals prior to kindergarten entry, and often we see that kind of universal screening that happens with the health unit for their immunization for school. So, all of a sudden, we have an influx of referrals that come in, children that we’ve never seen before and we won’t see. They often start the school year without being seen by an early intervention specialist, because we cannot meet the demands.

I don’t know if you’re seeing that in Quesnel, Lynn, but we are definitely seeing that in kindergarten roundup with the immunizations.

N. Simons (Chair): Could I ask: if you had your wish — this is too big a question — what services would be integrated? Where would the integration cover? What would the envelope of integration be? It might be unfair.

K. Bassett: When I look at the system right now, I think we look at zero to 19. So that’s where the integration is.

We talk about transitions and barriers for families. We see a transition and a barrier for families starting at school age. The system changes at school-age entry. No longer do they get early intervention services, which is the benefit of home visiting as well as ongoing support. As soon as they start the school-age system, they only receive consultative therapy support services. They no longer receive that family-centred approach to service delivery or family support that they currently would receive under the early intervention program.

We talk about transitions from school entry but also when you’re leaving school at 19. I think looking at the zero-to-three population as well. We mentioned about our long wait-lists at the beginning, where we do not have enough people doing early intervention at the zero-to-three population.

L. Mathiesen: A more integrated approach would be looking at all of the various programs that the government funds to make sure that there are clear pathways among and between those programs.

It’s very difficult for a family, particularly in a larger centre like Prince George here, I think, to find out where the services are if they’re not sort of all co-located in one place or under one umbrella. So if one agency has one contract, another agency has another contract, and there’s another agency that has another contract, and then you have to go somewhere else to get a specialized assessment or what­ever…. If they were more integrated so that we knew who was in the system, who was being served and when….

We know that children benefit from participating in more generalized programs while they’re waiting for therapy. We could stream them into those kinds of programs. We avoid duplication of services that way by having one…. I don’t want to say the word “centralized,” because that has a bit of a bad connotation, but it is kind of centralized.

It’s a difficult system we have there. If you talk about just MCFD and then you add in the medical system for children who have medical and health needs and then you add in the educational system, it does become very, very complicated for families. It’s that navigation piece that I think we are lacking the most in at this point in time.

N. Simons (Chair): We don’t really have any more time for questions, but Rachna, you look like you had a….

R. Singh: Okay, just a quick one.

You mentioned that the caseload has increased and that there’s a need for one full-time employee, but there’s not funding coming from the ministry. I’m sure that you have put in the request. So why do those requests…? When you talk to them, they look at the wait-list and everything. What is the response from the ministry?

K. Bassett: The response from the ministry is that, unfortunately, there isn’t any funding that’s been allocated for that program stream to support that need. So we get creative in looking at how we as an agency could help support that.

[4:10 p.m.]

Often we’re doing more with less funding. That’s when we speak to you about child development centres. We become innovative with our caseloads, and we integrate the best we can to service all families, to the point where we go into deficits. We have to fundraise, and we have to find those dollars to offset that need.

We keep going back to the ministry saying: “If there’s new funding, we have a plan that we can help you out with — those new dollars, if there are any — to help support those younger children.”

L. Mathiesen: Yeah, and that’s where the dilution of services comes around. You know, they just get watered down.

K. Bassett: We don’t see those children as often as they need to be seen, and then that’s what happens. The families are asking for more, and we can’t provide more.

N. Simons (Chair): Then you combine it with the acuity going up, and we have an issue.

I have to just say thank you very much. Very much appreciated. We’re not here because we think everything is working perfectly. I just want you to know that we’re consulting but we’re legislators consulting. I hope you know that your words will be very strongly considered in our deliberations.

Members, we’re just going to move right on and go to our next witness of the afternoon. We don’t always call people witnesses, but presenters, people who are joining us.

Joel McKay, welcome. Good afternoon. You are free to provide us with your insight.

JOEL McKAY

J. McKay: Perfect. Thank you very much. Good afternoon and welcome, southern MLAs, to the north. MLA Ross — I was expecting to see him here, but perhaps he got caught up today. Welcome, certainly, to our community.

My name is Joel McKay. I’m not here in my professional capacity today; I’m here as a parent. And I’m here to share with you a story about our family and some of the challenges and successes we’ve had with our daughter. I think it will tie into some of the things that you’ve heard as you’ve travelled around this province and, certainly, that I’ve seen in the Blues of your transcripts so far.

I’ll start off. Our family is fairly typical. My wife, Debra, couldn’t be here today. She couldn’t get away from work. We have two daughters, Ava and Rose. I’m here to talk about Rose.

Rose is lovely. She’s four years old. If I say a ton of fun…. She’s very intelligent and a lot of fun to be around. We’re two working parents. I’m full-time. Debra is a lawyer. They say she’s part-time; she’s actually full-time.

Rose was diagnosed with autism just after her third birthday. She’s going to turn five in September and will be eligible for kindergarten this fall. That has led us into a situation where we’re running into some challenges with the transition into kindergarten and the continuation of her treatment plan. That’s primarily what I’ll be addressing today.

If we cycle back a little while, we first started noticing that Rose had some behaviour delays when she was around the age of two. We were put on the public waiting list for a diagnosis. We were told it would be a six-month wait. Six months passed. We didn’t hear anything. We inquired. We were told it would be six months at least, possibly another year.

That’s when I got on the phone, and my wife did as well. We connected with other parents we didn’t know in the community. They said, “If you have the means” — and fortunately, we did — “then go and get a private assessment,” because you can’t unlock any of your funding without it.

So that’s what we did. We travelled down to Vancouver, the four of us. We got Rose diagnosed. Her particular challenges are significantly delayed speech, interpersonal communication delays and resulting social and general development delays.

She’s four. She currently has limited functional language. She can ask for something she wants, but you can’t have a conversation with her about how her day was or how she’s feeling. We’ve had many times when we’re dealing with emotional outbursts, extreme anxiety and days where either my wife or I are taking her into her daycare, and she’s kicking and screaming just because she struggles with those transitions.

After some trial and error, however, we’ve created a fantastic therapy program for her in Prince George that we’d like to see continue. Right now she’s attending Gateway behaviour services, which is housed in the Pacific Autism spoke, here in Prince George, five days a week. She’s receiving speech therapy through Northern Health, occupational therapy through the child development centre, and she has also benefited from a support worker through the CDC supported child development program, which has allowed her to attend daycare, which has allowed us to continue working. She attends daycare at the Y.

[4:15 p.m.]

Things are going well with Rose. We’ve seen an extra­ordinary amount of progress over the last year. What we’d like to see, as parents, is for that to continue, but the challenge we now face is she turns five on September 13, and she’s eligible for kindergarten. But what we’ve found is that continuing her current program with one-on-one support is the right direction for Rose. Moving her into the public education system or even a private school is not the right direction for Rose. It’s not only us, as parents, that feel that, but her therapists and her pediatrician feel that as well.

We want to continue that existing program, but making that happen, because of the structure of how these services are delivered in this province, has proven to make that incredibly challenging.

First, there’s a lack of child care support. Given that she’s eligible for kindergarten, we are losing our support worker from the child development centre because we’ve opted not to put her into kindergarten. The CDC has, obviously, a long wait-list. It has to address the other kids, so we are out of luck with our CDC support worker.

This means that we need to find somebody else to go with her to daycare; otherwise, she can’t go to daycare. If she can’t go to daycare — we don’t have any family in town — one of us has to quit our job. That means, of course, she’s unable to continue at the Y. They’re happy to have her continue to attend, but we need that person.

The public school system is not a great option. Even if Rose is ready, it isn’t — for continuing the plan, specifically here in Prince George. We’ve been told by the school district that we would not be able to bring her current BCABA into the classroom to assist here. The support team that we’ve developed through all the private operators cannot go into that public education setting within the school district here in Prince George.

If they do provide someone — and the school has advised us they would — that person would likely only be able to see Rose a few times a month. We were told by the school district that there’s no disability coordinator or person we could discuss these concerns with. We would effectively have to enrol our daughter, and then it would be up to the principal to determine what supports the school could or would provide.

Trying to establish a distance-learning program is the other option. Putting her into distance learning, finding the funding and then having somebody with her so she can continue at the Y or in preschool is the option. But we’re on wait-lists for all of the distance-learning programs that are currently available, with not necessarily a lot of hope that we would get into one by September. As a result, my wife has taken September off, in the hope that it will give us a little bit of extra time.

There’s an extreme lack of early childhood educators. I’m sure this is not news to you in the province of British Columbia. But certainly it is the case here in Prince George. If we need to get a nanny or another caregiver for Rose this fall, good luck. We’re having great difficulty finding anyone to even provide general babysitting for backup.

Why does this matter, from our perspective? Well, as parents, I’m sure you see it and understand it clearly. It was suggested to us that we just put her into kindergarten and let her repeat. But it’s about more than kindergarten readiness for us. It’s not just: can she cut, or can she write her name? If we put her in, she will fail, and she’ll have to repeat. The long-term consequences for Rose, or children like Rose, are significant in her mental health, her development, her social skills and the stigma that goes along with us.

So the question for us, as her parents, is: what’s the most benefit for Rose? Well, it’s clear to us that the most benefit for Rose is to continue the plan that we have in place for the time that we can until she’s ready to go into the public education school system, which is probably only a year or a year and a half.

What can we do? Well, this is where we have some suggestions. The first suggestion: more flexibility around kindergarten entry. More support for parents should they determine or delay entry for their children, including continuing speech and occupational therapy support through Northern Health and the CDC, and the ability to continue to receive support from the supported child development program.

The second is more support for ASD children in the public school system, including the ability to bring a child’s current therapy team into the classroom, particularly if the child is already receiving help from a board-certified behaviour consultant. Some school districts in B.C. are already doing this. The Peace River regional district — Peace River school district — is one of them. There are several others.

[4:20 p.m.]

A universality of how we approach this is an easy policy fix, from a government perspective, that could provide significant flexibility for parents who find themselves in our situation.

Focus on training more early childhood educators. I know this is a hot topic in government. It’s not the first time you’ve heard it. But from a northern perspective, just training more early childhood educators does not necessarily mean any of them are going to end up in northern communities. In fact, given the current labour market situation in British Columbia, what it actually means is that most of them will end up in the Lower Mainland or larger centres. That leaves our smaller communities — Prince George being a larger one, but Terrace, Kitimat, Williams Lake, Quesnel, Fort St. John — out of the loop.

My recommendation there is that government look at creating a northern incentive program similar to the northern medical program, where you actually incentivize, possibly through a rebate through education, for early childhood educators to get educated in that program and fill jobs and vacancies here in northern B.C. to support our communities.

Government also needs to look at putting more resources into northern communities to support early diagnosis of ASD. Waiting a year and a half for a diagnosis is a problem, especially for us. Had we waited that year and a half, we might only be getting diagnosed now, which would mean that we would only have about a year at full funding before our funding runs out.

That brings me to my last recommendation, which is that government should consider looking at alternative funding models that are not necessarily tied to age for those on the spectrum. One thing to consider is that it should actually be tied…. Six years old is an arbitrary number. Take a look at tying it to the date of diagnosis and for a period after that.

It’s true, according to the Centers for Disease Control in the United States, that most children on the spectrum aren’t diagnosed till four or five. If that’s also the case in British Columbia, which we understand it to be, then you’re losing out on a significant amount of your funding in those early years, where intervention is absolutely critical. So if we were to look at altering how we fund that, we might be able to have more parents, who are getting that late diagnosis because they’re on waiting lists for a significant amount of time, to have a greater chance to maybe capitalize on those dollars, get the therapy and intervention early and carry on.

That brings me to the end of my comments. I’m happy to take any questions.

N. Simons (Chair): You had 20 seconds…. Oh no, you’re over by 31. Joel, it’s really important for us to hear the perspectives from families, and I really appreciate you taking the time to do that.

Maybe I’ll go to the committee members first.

R. Glumac: Could you review again your second suggestion? I was trying to take the notes, but I didn’t catch it all. You were saying there was another school district that did something, and you wanted to normalize that across the school districts. Can you just go into that in a little bit more detail?

J. McKay: Yeah, absolutely. The issue here in the school district in Prince George is that you can’t actually bring your therapy team into the classroom to support your child. There are a number of reasons for that. However, in other school districts, that is allowed. So that is a specific policy that is tied to the school district itself that can be customized.

We have multiple school districts in B.C. where that is allowed, so my suggestion is that we look at making that universal across B.C. If we have a best practice in a school district, where it’s working elsewhere in British Columbia, why aren’t we replicating that in a school district where it’s needed?

R. Glumac: Which school district did you say?

J. McKay: Peace River is one.

N. Simons (Chair): The whole issue around getting a diagnosis for funding, as opposed to funding based on the presenting issue. Waiting for the diagnosis means a wait for the provision of whatever adaptive behavioural intervention or what have you that comes along. I’m just wondering about the whole idea of the question around whether or not the needs should be funded first while diagnosis is being waited for.

I think, obviously, we need a faster diagnosis. That would be the result. That would be probably obvious to everybody here. We need faster diagnosis and faster implementation of services. But while we have to wait that long, and while we recognize it probably takes a bit for those wait-lists to come down, do you think there are things that we could recommend?

J. McKay: Yeah, absolutely. I mean, there’s not a parent on this planet that’s going to say: “Look, if you can make resources available and therapy early before we have the diagnosis and then offset our costs afterwards, we’re not going to take advantage of it.” Everybody’s going to take advantage of it.

The early things we ran into in this community that were particularly challenging were finding a board-certified behaviour consultant to set up a plan and accessing occupational therapy. Actually, in Rose’s case, which I highlighted specifically, our first indicator was speech-language. So putting more resources into that and, again, looking at some type of an incentive or training program to get those resources based into northern communities would be critical.

[4:25 p.m.]

This is an important piece. This is not just for children with neurodiverse special needs. There are all kinds of people that take advantage of SLPs, right? If we did invest in having those resources available more broadly, then, yeah, if you’re a family, while you’re waiting for that diagnosis, you can start to take advantage of it. The challenge is that if you’re in an income bracket where you can’t afford to pay for that, and you don’t have your diagnosis, and you don’t have your funding, then what?

So it’s yes, and yes, but I’d say more critically — there’s a social component to this too — that the diagnosis does help the family come to terms with the challenge that they have and move forward. If we can move on that, instead of reinventing the system, get that wait-list dealt with and then bring in the resources behind it, then I think we’d be in a much better place.

As I’ve outlined, some of my suggestions are not necessarily looking for more money — though, as my predecessor pointed out, many of these programs are woefully underfunded. I think there are policy changes that don’t necessarily cost any more, in terms of direct program dollars. They could actually solve some of our challenges and create more flexibility for parents. That may be the last message I would leave you with — which is that, really, it’s about flexibility.

N. Simons (Chair): Laurie, you have five seconds for the question. You have ten seconds for an answer.

L. Throness: Thank you, Chair. I’m going to speak really slowly.

The prior presenters just talked about the waiting lists, that they’re horrendous and so on, at each CDC. But Rose seemed to have had a lot of attention from the CDC, and regular attention. How did you get that attention at the CDC? How did you get around the waiting list?

J. McKay: We didn’t get around it. We were lucky. As a parent, you put yourself on the list, you make a phone call, and you hope you get picked. We got picked; I don’t know how that worked. It’s a bit of a black box, but we’re lucky. We were also extraordinarily lucky that we found daycare. Otherwise, one of us would’ve had to leave our careers. We have had a bit of luck, but those wait-lists are long.

Even though we had luck early on, which has helped Rose so far, we’re now on the unlucky side of it. If we can’t find the resources and the flexibility come September, then because the CDC has that long wait-list, we lose what support we’re getting from the CDC now. They have to make decisions based on the resources they have available, and no fault to them at all, but we feel it on the other side.

L. Throness: What will you do about this year for Rose?

J. McKay: Well, we’re hoping that we can get her into a distance-learning program. If we can’t, one of us will have to leave our careers. It’s a challenge. I’m a CEO; my wife is a Crown prosecutor. Giving up one of those incomes is significant to our family, and I can tell you there’s no shortage of need — you can pass this on to the select standing committee on justice — for prosecutors in Prince George. So her giving up her career also does present some challenges and ramifications for our community as a whole too.

N. Simons (Chair): It’s important for us to hear about the effects of the challenges that parents and service providers feel in this sector. Thank you again. We really appreciate your time today.

Let’s welcome to the table Susan Doran and….

Oh, Stephanie gets to hold the little one. I think that’s really the Chair’s job, but I’ll defer.

Welcome to the committee.

SUSAN DORAN

S. Doran: I really appreciate that Joel went first, because his concerns are also my concerns. I’ve got two daughters now. My older daughter is eight; her name is Collyns. She has a very rare genetic syndrome; it’s called Bainbridge-Ropers syndrome. It was only actually found in 2014. She was born in 2010. So there were four years where they didn’t know what was going on with her. We only found out because we got to participate in a genetic study — which was huge for us, to be honest.

My concern right now…. We’re making do. She’s eight years old, with a mental age of about one or two. She is in school full-time. She is not there to learn typical school things. She’s there to learn how to be social, to learn how to be kind — the sort of thing that gets taught, as to a normally progressing child, but that she needs help with.

[4:30 p.m.]

Collyns is in behavioural intervention, just like Joel’s daughter, Rose, is. We’ve found the same issues, where her behavioural intervention team cannot come into the school because they’re private. Collyns goes to a public school.

That’s really hindered a bit of her learning, just because that BI has been amazing for her. She’s picked up so much. She does things for them that she will never do for me. It’s almost a bit frustrating, but she can do it. She’s learning, and we’re figuring out how she learns, which is a big part of it.

My struggle is that we have lost a support worker for Collyns. Now Collyns is eight. She’s in grade 2. We’ve had a support worker up until this year for daycare for Collyns. Collyns has an EA at school, which is dealt with through the school district. But the support worker for daycare, we have now been told, we’ve lost.

I called in January, my normal call, saying, “I need a support worker for spring break and for summer,” because part of Collyns’s therapy is socialization. That is what a daycare provides for her. We have a daycare that really likes Collyns. The kids like Collyns. They want her back, and it’s sad that my issue is that we don’t have a support worker so that she can go back. She does need the one-on-one. She needs help eating. She needs help with incontinence. She needs help with everything. She is a one-year-old, unfortunately, in an eight-year-old body, which gets her in trouble.

She’s got nasty…. She doesn’t have a sense of danger. Some of her other reflexes are just like: “Think, child. Just think about it.” But she just doesn’t have that. So we’re struggling with that right now. This year I’m on mat leave, so it’s not such a big deal, but next year I go back to work. And as Joel says, one of us, if this continues…. Both my husband and I work. I don’t know how we’re going to hold down two jobs. We need two jobs.

Collyns could potentially end up in a wheelchair. We went house hunting about four years ago and couldn’t find a house that would fit our needs with her, so we built her a house. Thank goodness, my husband knows how to build houses. That’s a big bill that we’re now paying for, but it is Collyns’. We built it for her, and it’s got all of her needs in it. It’s comfortable for her.

We need to keep that house, but we might lose it if both of us can’t work. I’ve talked to…. I’m on a few Facebook groups for special needs kids, and I’ve posed the question: “What are we doing? What do we need? What are they doing?” One of them has quit their job. I don’t understand why that’s even a thing — why people are quitting their jobs — when there is support out there. It’s just that we don’t have access to it.

My daughter did go to the CDC as well. The CDC is amazing. I honestly don’t understand why they shut their daycares down, because she progressed so much through those daycares and through the services they provided. I still, when Collyns…. We happened to find out she needed a surgery, which happened last September. We found out her hip was displaced, which we totally didn’t know. My first question was to the CDC: “How do I do this? What resources are available for this? How do I get a hospital bed? How do I get a wheelchair? How do I do this? How do I do that?” They are always my first call when something funky comes up, because they are like my experts.

Yeah, I don’t have an eloquent speech. My apologies.

N. Simons (Chair): That was very eloquent.

S. Doran: I’m like…. I need help. I need help for my daughter. I don’t want to stick her in a daycare to get rid of her; I need to stick her in a daycare to develop her socially. She’s never going to be a “one plus one equals two” kind of…. She’s who she is, and I love her for that. We are never going to be empty nesters. Although I’m hoping Bexley finds a job and leaves. So far, we know that she’s a pretty typical child.

[4:35 p.m.]

We need that help, and we struggle finding that help. As the CDC lady says, there’s no: “Here’s what you need to look into if you have a child like this.” I just found out on Thursday that the At Home program does travel. I didn’t know that before. I don’t think it was in any of their brochures. So I’ve been paying for travel and submitting it to my benefits. They pay for it outright. Where’s that information?

I struggle with finding the information I need when I need it. It’s just these little tidbits I pick up from other parents, from other resources. People have the knowledge. It’s just that it’s not in one spot.

N. Simons (Chair): You spoke very clearly and very well.

S. Doran: That’s kind of where I’m at. She’s a wonderful child. She’s super funny.

N. Simons (Chair): Yeah, yeah.

Laurie has a question.

L. Throness: Who paid for your one-on-one support worker? I mean, that’s a big job.

S. Doran: The supported child care through the CDC. We’ve always paid for the daycare. For the supported child care worker, I just called the supported child care manager at the CDC. I was like: “Hey, it’s that time of year again. Can I get a support worker?”

Last year for spring break, I got one. For summer, they were saying that they’re having funding issues, so we may only be able to do part-time. I had to work some overtime just to make sure I covered her. Then they found some funding, so she got to go full-time, which is awesome. But this year there’s no funding for any child in school. For any school-aged child who needs a support worker after school or on breaks, there’s no funding for it, I got told.

Another thing. Can I just say one more thing?

N. Simons (Chair): Absolutely.

S. Doran: Why do child disability benefits go on their parents’ wages? It’s not like their disability decreases when their parents’ wages increase. We started out at one amount, and now we’re at only $66 a month for disability child benefit for my daughter. She’s actually getting more…. The stuff we need is actually getting more expensive as she ages. That’s why we tend to pick up an extra shift every now and then — because we need to be able to afford those extra things. Anyways, that’s my other beef. Sorry.

N. Simons (Chair): Michelle, do you know what that question is?

M. Stilwell (Deputy Chair): It’s a federal question.

S. Doran: Yeah, it is. I’ve asked. I’m like: “I don’t understand.” It should just be a straight amount. It’s a disability. No matter what the parents work, it’s a disability. If they can afford not to have it, that’s amazing. We cannot.

N. Simons (Chair): We can also write letters to the federal government if we need to.

We have questions over here. Ronna-Rae, and then Rick.

R. Leonard: Thanks very much for your presentation, and thanks for bringing the little one.

S. Doran: Sorry it was so scattered.

R. Leonard: No, no, no.

You answered the question I had about why you were losing the support worker and child care. It was an age that we hadn’t heard about — that end of service because they’re age eight, or something around that.

S. Doran: It wasn’t that way last year. I don’t understand where the funding went this year. It’s not around, apparently. That’s what I got told, anyways. But I got a support worker last year.

R. Leonard: I’m looking ahead to the future. Your daughter is never going to be a fully functioning person. Do you have an idea of where you’re going to be going for supports as she gets older?

S. Doran: Not a clue. Honestly, right now I’m trying to figure out next year, when I’m back at work.

In the back of my mind, every time I see a worker with an older child, I’m like: “Where do you work? How can I figure this out?” Or a worker with an adult person with special needs: “Where do you work? Where are you from? What agency? Who do I need to contact?” That’s always in the back of my mind. I have no idea where to go from here, to be honest.

Thank goodness she’s got an amazing support worker at school or else we’d have probably gone private. We can’t really afford that either, but we will try.

R. Glumac: Thanks. Just so I’m clear, your child is not diagnosed with autism.

S. Doran: She is.

R. Glumac: Oh, she is.

S. Doran: Yeah, sorry. She’s got Bainbridge-Ropers Syndrome. She’s been diagnosed with autism. She’s got epilepsy. She’s got a couple of other things as well.

R. Glumac: And how did that diagnosis go for you? When did it…?

S. Doran: Like how did that happen?

R. Glumac: Yeah, did it take a long time, like everyone else that we’re hearing from?

S. Doran: She’s a bit of an enigma, to be honest. When she was born, she was born with metopic craniosynostosis, which means her forehead was fused already. There was no soft spot. We got sent down to Vancouver to talk to genetics, a neurosurgeon and a plastic surgeon. Right away she wasn’t hitting her milestones. They knew something was up, but they didn’t know what it was.

[4:40 p.m.]

Then they did chromosome array testing. We found out that she’s actually got a deletion in her seventh chromosome, which my husband also has, but he’s a very typical person. What’s always in the back of my mind is: “Is this it? If my husband is fine, why is she not fine?” Then we saw the head of the genetics department. He took one look at Collyns, and he was like: “There’s something going on. There’s something else going on.”

In the meantime, we got sent to Sunny Hill to get diagnosed with an autism test, which…. To be honest, her pediatrician sent her down there for that. I was like: “I can’t see it. I can’t see it.” But the more I’m learning with autism, the more I see the pattern. Bainbridge-Ropers is such a new thing that we’re all learning different things about it.

Like I said, through the study…. They did a huge test, and they found out that she’s a bit of a Professor X baby, because this mutation in her gene is all her. It’s not that any one of us had contributed to it. It’s just a naturally occurring thing, I guess.

R. Glumac: So one of the struggles you’re having is trying to find information about things.

S. Doran: I’m trying to find information. That’s nice to have. It’s always nice to put a name to why your child isn’t a typical kid. It’s nice to have something to blame, right? Information is coming out about it more and more often. My concern is my day-to-day living, her day-to-day living, her day-to-day care. Although I do think about the future, that’s all I’m capable of changing at the moment, so I’ve kind of got blinders on. How are we going to get through the day? How are we going to get through the year? That’s the farthest I go: how do I get through the year?

R. Glumac: Some of that, also, is not just information about what your daughter has but also information about what services are available to you and what things can be paid for.

You mentioned that you found some way to get travel paid for. What was that again?

S. Doran: Yeah, the At Home program. She is a part of the At Home program, thankfully, because she’s still in diapers. They provide us with diapers; they provide us with wipes. They do that sort of thing. She’s on their medical, so they help pay for prescriptions, because she’s on an epilepsy prescription as well as an ADHD prescription. That has helped a lot.

R. Glumac: Is that program run through MCFD?

N. Simons (Chair): The At Home program is administered by….

S. Doran: Is it a ministry program?

N. Simons (Chair): I believe so, yeah.

S. Doran: I think it’s a ministry program. She gets respite through them as well.

N. Simons (Chair): We’re just wondering if it was MCFD or if it was Health.

A Voice: It’s MCFD.

N. Simons (Chair): Thank you. An audience member interjected with the answer. Thank you very much.

Susan, thank you very much for sharing your experience. We really appreciate it.

Jennica Graham, thank you for joining us by phone. The members of the committee are paying attention, so go ahead.

J. Graham: Was there a question that was asked?

N. Simons (Chair): No, not just now. We’re just giving you the floor, and you have ten minutes.

J. Graham: Sorry. What am I speaking about specifically? Could you give me some parameters? I was a little bit unclear as to what I’m speaking about.

N. Simons (Chair): Who called whom here?

J. Graham: I was just told that I will be speaking about my experience at navigating the system with my two kids.

N. Simons (Chair): Okay. Well, it gives me an opportunity to explain what we’re doing. We’re a committee of travelling MLAs — sounds like a merry band of MLAs — and we’re finding out what we can about the service delivery system for parents and children, families with a child with neurodiverse special needs. Our goal is to try to make recommendations to improve the system, and we’ll benefit from hearing from service providers and from family members, siblings, parents and grandparents.

Your experience in the sector, your observations, etc., are what we are interested in. You have ten minutes.

[4:45 p.m.]

JENNICA GRAHAM

J. Graham: Well, I’ve got two kids with autism spectrum disorder, and I have had experience navigating the system. Our first child was diagnosed when he was five years old, but prior to that, I guess, we started seeing signs when he was about three. For us, it was really frustrating — that time period, that gap between three and five, where he could have used a lot of early intervention. We were just doing all the things that we were supposed to do — went to the doctor, went to the pediatrician — and we were on a wait-list of some sort, waiting for a long time.

We were in the position, luckily, that our parents were willing to help us out financially by doing a private diagnosis. We went ahead with that, which was very timely, because he was in kindergarten at that point. Like I said, he needed support prior to that, but he got diagnosed, and he got access to an EA after his diagnosis. That was really helpful for him. We started a home service team for autism.

His story is a very successful one, I would say, because we got in there as soon as we could. Unfortunately, his preschool experience was not as positive as it could have been, but in kindergarten, he made really great strides. Now he’s nine, so he’s really managed well with his program. He’s still getting speech services. We get autism funding for that. I would say his story is a good one.

Our second son was born two years later. We suspected something was up when he was probably around two years old. We did all the things we knew we were supposed to do. At that point, we were moving to Vancouver Island. That’s where we are now.

We got on a wait-list to have our son assessed. We wanted to do that route, because we knew it would be a shorter wait-list, but it wasn’t quite as short as we had hoped. He had started kindergarten at this point, and he kind of struggled through. There wasn’t an EA with him. He didn’t have any support. It was a really hard year. We waited that whole year. He didn’t get assessed until it was the end of the school year, I believe. Now he’s in grade 1.

Even if I were to just back up a little bit, to preschool, we did have a support worker, through child development, come in to take some notes. That sort of went along with our theory that something was not quite right. We did have a little bit of support, there, but I did notice that, as soon as he was in kindergarten, all of the support that we had at the child development centre just ended, because he aged out. At that point, we really didn’t have any support at home or at school. There was nothing until there was an actual diagnosis. Like I said earlier, it was a really hard year for him. He really struggled.

He did get diagnosed in the summer after kindergarten. He has an EA now, which is great. It’s not just for him. He shares the EA with other kids too. There’s a child and youth support worker at the school, who is there a lot more this year. I’d say she’s there, I want to say, 75 percent of the time, at least. Last year, the person that was there was only there about 50 percent of the time. That’s when we could have really used her help, but luckily, for whatever reason, this year there was more support, just in the school. She helps out on the playground with my son and with other kids that struggle with social skills.

That’s sort of what I had to say about that. There might be some more questions that you had, but that’s the journey.

N. Simons (Chair): Well, thank you very much for sharing that journey with us, Jennica. I look to my colleagues around the table here and wonder if we have any questions.

Ronna-Rae, from up the road in Courtenay — she’ll ask a question.

R. Leonard: Hi, Jennica. Thanks for sharing your story with us. I think I missed a piece there. I thought you had said that with your second child, you recognized and were suspicious when he was two years old, and it took until the end of the school year in kindergarten before he was assessed. But I thought you’d said something about trying to fast-track things.

[4:50 p.m.]

I think I missed something in there. Can you recount your tale a little bit again on that with your second child, between the age of two and when he was finally assessed?

J. Graham: When my second child was two, we suspected there was something not quite right, so we did talk with our doctor about that. At that point, there were a lot of different reasons why we didn’t jump into getting him assessed right away. We wanted to see if maybe he was mimicking his brother because his brother was quite impacted at that point by autism. So we thought we’d give it some time. Then once he was in preschool, it was the same thing. We were hearing the same story.

At that time, we actually moved from the Fraser Valley. That’s where we were at that time. We moved to Vancouver Island. In the process of moving and all the busyness of that, a little bit of time took place, and we did all the things that we were supposed to do once he was in preschool. We got a child support worker. We talked to his preschool teacher.

We started the process of getting him on a wait-list, and even just getting him on the wait-list took probably about eight or nine months. Once we were on the wait-list, we were told that it would be…. I think we were told it was going to be ten months, but it ended up being more like 13 months, just over a year. It was just a lot of waiting. That’s sort of the reason why it took so long.

N. Simons (Chair): Okay, thank you.

Ronna-Rae has a follow-up question.

R. Leonard: Thank you for that response. That clarifies it a little bit for me.

The question I have is around the child development centres and your connection with them, having moved from one location to another. Did you seek them out as a resource, having had the experience in the Fraser Valley? I’m curious about how parents are accessing any kind of supports that they might have available to them, whether or not they know about them, that sort of thing.

J. Graham: No, we wouldn’t have known about them if we hadn’t heard from the preschool teacher, because I guess the preschool teacher was familiar with the support care worker. The support care worker from the child development centre had been in her centre before, so she actually recommended that, because at this point we just had a new doctor, or…. I don’t even think we had a doctor, actually, at that point, so we were just relying on our preschool provider for that information.

R. Leonard: Okay, thank you.

N. Simons (Chair): Well, thank you, Jennica. We appreciate you taking the time to give us your perspective. Thank you for joining us.

J. Graham: You’re welcome.

[4:55 p.m.]

N. Simons (Chair): Michelle McElroy, welcome to the committee. Thank you for taking the time to present.

M. McElroy: Thank you so much for coming to Prince George.

N. Simons (Chair): You’re welcome. We’re glad to be here.

MICHELLE McELROY

M. McElroy: I’m a children’s clinical counsellor. I currently work for the school district as an elementary school counsellor. I’ve worked the last six years in inner-city schools. What I really would like to talk today about is equity — in particular, equity in the north. No one here is from the north, are they?

N. Simons (Chair): We have a committee member who’s not present today, Ellis Ross. He is, yes.

M. McElroy: What I want to talk about are the students that I work with. I am not a resource teacher. I am not the person that does the assessments, but I work with children with behavioural challenges. What I see are many students who have a diagnosis of autism, of FASD, of neuro-atypical unspecified — right? — disorder. Neuro-atypical unspecified disorder gets no funding.

Where I see the biggest problem is that many children who have experienced significant early childhood trauma have significant developmental delays in all domains. We’re talking cognitively, socially, emotionally, physically. Right now, particularly, one of the things I think the Ministry of Education needs to consider is: how do we get funding for children when, at this point, there is no diagnosis or money given to that diagnosis?

But particularly what I want to talk about is, in Prince George, we have many families that have moved from other northern communities. They moved to Prince George as the centre, looking to improve the lives for their children, particularly First Nations families. Those are many of the people that I work with — my school. I want to talk about some of these kids.

Our families — they are so vulnerable. Many are so marginalized due to race, due to poverty. They don’t drive. They may not have a vehicle. Their children have never been able to attend preschool.

I have children that I see coming in kindergarten. They have never been assessed at the child development centre. They have never been seen by a pediatrician. They have never had any type of early intervention of the sorts where maybe a parent wouldn’t even know that the child’s development is off because they don’t know themselves. Or maybe these parents themselves have significant developmental delays and they aren’t able to navigate any of these systems.

You’ve spoken and heard from parents today who are advocating for their kids. Yet they’re saying: “It’s so difficult.” Imagine, I suppose, why I’m here today. I want to speak for those families that are missing out because they can’t even begin to navigate these systems.

I want to just give you some examples, because I think that that’s maybe helpful to give you a picture of what I’m talking about. If we have children that have never attended preschool…. It’s not easy for parents to even take their children to a doctor. Pediatricians have huge wait-lists in Prince George. So they don’t have preschool. They haven’t been to a Head Start program. Already, there is no early intervention.

Then we get these children that are coming into school with intellectual delays, autism, FASD. They have not been brought to anyone’s attention — so, again, no early intervention. In the north, we don’t have enough school psychs. There are huge — like, we’re talking year-long — wait-lists to get our children addressed by a school psych within the school system. So this is particularly a difficulty for our district. They, I believe, need to do whatever they need to do to recruit people to come here, right? But at this point, we have children for years on wait-lists within the school district.

Now we have children that maybe — finally, after years — have got a diagnosis. So we might have a child with a moderate-to-severe intellectual delay. It would be recommended in the report.

[5:00 p.m.]

For example, I work with a friend. I’ve worked with him since kindergarten. This year he’s in grade 7, and he has still never been registered with child and youth with special needs. So that would be one of the recommendations made for this child with very low IQ. He doesn’t know how to look after his teeth. In that family, they also don’t know how to do that.

This is not an unusual situation. This is many children. So when I’m giving one example, there are many children that I’m speaking about.

I now have a child in grade 7 who has holes in his teeth, rotten front teeth. We’re implementing a brush program. What I’m going is: “How come…? I thought this boy has the diagnosis. He’s had a diagnosis since kindergarten.” But what’s happened is that parent is not able to navigate the system to have that child registered with child and youth with special needs, which falls under the MCFD umbrella.

Where are the stopgaps? Where are the pieces to help our most vulnerable families? If and when their children finally get diagnosed, how are we supporting them to navigate the system? The very first thing they would need is to be registered. Once they’re registered, then they could find out, at least, about the opportunities that are available to them. All these supports that the government…. We have a group called AiMHi. We have the child development centre, although we’ve talked about the age cutoffs there.

For kids with developmental disabilities…. Here’s a child, now in grade 7, who’s never had any adaptive skills training. He’s never had any functional skills training. He’s never had safety, hygiene sort of training. The school is trying to do what it can in the meantime. But imagine the years of intervention that this child was actually entitled to but has missed out on. Again, what you’re paying for later is so much more compounded because this child has missed.

Now, I want to say…. That’s just one. This child has two siblings that also have a diagnosis. Nobody has been registered. I phoned the social worker. “Can you register them?” The youngest child I can’t get seen by the school psych because they haven’t had their eyes tested. An eye test costs $50 if you are a status First Nation. That is prohibitive. Again, we have children, many children, that are status First Nations. Extractions are not paid for under the federal funding for dental for status First Nations, status Aboriginals.

There have to be stopgaps in place. There are just too many kids with developmental disabilities where their parents are unable to navigate the system.

I’m thinking of another child who has autism. As he gets older, because his social skills are so poor…. Again, we do as much as we can at the school level. He is entitled to intervention funded through AutismBC, but he can’t access it. Mom doesn’t drive — a single parent, many other children. How is he supposed to receive behaviour intervention? They used to drive.

There’s not enough funding to pick up these kids anymore, right? Always I’m just seeing there’s not enough funding, especially…. It is so inequitable for families that don’t have the wherewithal to work these systems.

I guess some other things I wanted to talk about…. Again, where are we helping? Where can we support marginalized families to bridge the gap to even getting them registered once a diagnosis has been made? That’s a problem. It’s not happening.

Kids with FASD should be registered with child and youth with special needs. It’s not happening. Their parents are often very, very marginalized, vulnerable people that do not have the skills to do that, or maybe their mental health is impairing them from doing that. So how are we helping these kids?

The last thing I want to talk about is, again, thinking about children with significant delays, probably due to early childhood trauma….

[5:05 p.m.]

For example, I have a 12-year-old foster child, who is now in my care, who has five-year-old social skills — has been assessed — has six-year-old problem-solving skills and has age 6.5 safety skills. This is a child that cannot be on their own. However, their IQ is slightly above what it is that you can be qualified to register as developmentally disabled. So they don’t qualify for child and youth with special needs. This child ages out of after-school care. They are now turning 13 this summer. This child cannot stay home alone.

Now I’m talking, even, personally. What do I do with this child who is supposed to be able to attend the Big Brothers Big Sisters, where the ministry pays for this child to attend, when they’re going to age out, yet they don’t have a diagnosis? There’s no diagnosis to cover, again, unspecified neuroatypical, neurodevelopmental disorder. There’s no funding. This is where we’re talking about…. It needs to be needs-based, not just diagnoses.

Again, I am able to advocate for this child very well, and I’m still finding it difficult. I can’t imagine how difficult it is for our marginalized and impoverished families, illiterate families, families that have developmental needs themselves. There are so many, and you don’t hear from them. They’re not here, and it would be difficult for them to get here. It would be difficult for them, sometimes, to even come into our buildings due to generational trauma. They are skeptical and suspicious of schools, and I don’t blame them at all.

What we need is…. Where are the stopgaps to help these kids? In the end, what we’re having are children with an FASD diagnosis, significant developmental delays. Where are they going to end up — in the Justice Institute, in your mental health institutions?

This is, to me…. I suppose it sounds like I’m being very dramatic, but this is where I have lived for the last seven years. This is what I’ve seen. My children go into high school, and they have never been registered with child and youth with special needs. Their parents don’t know what to do with them. They’re out of school by grade 8.

N. Simons (Chair): I think what you’ve brought up is very, very well said. I have to say that I couldn’t agree more. I did work for ten years in a First Nations community, and I think that you speak for all the parents who are hesitant to get involved in a system that has often been seen as very judgmental and very cold, sometimes, and not a very…. I’ve always wished that when a social worker goes to a family, the family feels relief that there’s a social worker who’s going to help them. I don’t think that’s always the case these days.

My question, if I may have chair prerogative. What do you think the relationship is with MCFD? What is it that is the biggest barrier for families seeking help?

M. McElroy: Well, absolutely, there is a funding problem. There are not enough social workers in the north. They are getting anybody with a bachelor’s degree to apply to work as a social worker in this community.

We’re a fairly big city. If you have super vulnerable and marginalized people coming from the north to get help and to live in this city…. They’re evicted due to racism, due to rising prices in rents. They move around the city. Even then it’s difficult for them to receive help, if they, say, have an advocate like myself at a school. But if they are having to move back and forth….

The social worker is a huge piece, because they are connected to the family. They should be connected to the family, right? It can’t all fall onto the school system. Right now, as I’ve said, they are so overworked. They are so overburdened. We do not have enough manpower. There are so many children missing out on what they are entitled to because their families cannot navigate the system without help, without support.

R. Singh: Thank you so much. The way you described it, with compassion, with empathy…. It is very important. These are the most vulnerable, most marginalized communities.

One question that you said. They have the diagnosis, but they are not even registered. That’s a gap. That’s a big, big gap.

M. McElroy: Big gap. Big problem.

[5:10 p.m.]

R. Singh: You have talked about the lack of social workers and all. But then, once a diagnosis happens — done by, for example, Sunny Hill or any other….

M. McElroy: Well, no. Our families cannot get to Sunny Hill. Are you kidding me? Do you know how difficult that is?

R. Singh: How does the diagnosis happen, then?

M. McElroy: I’m saying that if they manage to get it done through the school system — which, as I said, can take years — then the school psych would meet with the family. They would have a team meeting with the school, and they would make recommendations. There would be a psychological assessment report.

R. Singh: So it is done in the school system, not through the…?

M. McElroy: It’s done at the school, and then it is left to the parent. But I’m saying that there are parents that cannot read the report. So how is this helpful for them?

R. Singh: There’s no follow-up, then?

M. McElroy: Not that I’ve seen. I don’t know where that follow-up would come from.

My job at the school is to work with the families in the school, helping them navigate school. I didn’t even know about CYSN until I started going: “Why hasn’t this child, who has an IQ of 50, received some sort of intervention?” Then I find out that, well, they have to register with this. Well, how do you do that? I’ve worked as this parent’s advocate, and even I found it impossible to try and get her there because of the chaos that’s happening in her life and in the family’s life.

R. Leonard: Thank you so much. This is exactly the thing that I’ve been waiting to hear, because I was thinking: “How are we ever going to hear from the people who haven’t accessed the system?” You just brought that for us, so thank you. I don’t really have a question.

M. McElroy: I guess I want to say that there are lots of them — lots. I work in one inner-city school. We have five at that same level of vulnerability index in Prince George — five schools. Those schools have hundreds of children. In my school alone, I mean, I can’t even…. I’m just thinking of more than what I could name if I had five hands.

N. Simons (Chair): Thank you so much for your presentation today. I hope that you are going to be pleased with what we recommend in our report. We report out early fall, and we have an opportunity to raise awareness with people who make the rules and who make the policies and who decide on the funding. As an all-party committee, we do that based on what we hear from communities. That’s why we’re glad we’re hearing from you.

M. McElroy: That’s why I’m so thankful that you came to Prince George today, because if we’re the hub for the north, and we’re saying we are desperate for resources…. I mean, I haven’t even talked about mental health wait-lists in this community. They’re out of control. So the more help and the more advocacy you can do on behalf of the north…. We thank you so much.

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

We’re going to welcome Bonnie Fallowfield up to the desk, table, podium, witness stand. No, it’s not that.

Bonnie, thank you for being here. You’ve seen how we operate. We’re mostly friendly. Thank you for coming.

BONNIE FALLOWFIELD

B. Fallowfield: Thank you for allowing me to speak. I wasn’t originally on the speakers list, and as I was sitting in the audience, listening, I really felt that I needed to. I’ve got ten minutes. I’m going to see how much I can get in here.

I have a son who’s 31 years old now. He was born at 25 weeks gestation and weighed 1 pound 13 ounces, if you can imagine, and spent three and a half months in B.C. Children’s Hospital. That was his start to life.

Coming out of the hospital, he was diagnosed as blind. By three years of age, we knew something else was going on with him. I knew it was autism. It took us until age 14 to get that diagnosis. The way he got that diagnosis was that he ended up having an emotional breakdown and spent three weeks in an adolescent psych ward in Prince George. That was due to people not understanding the supports that he needed. It was a complete battle for us to get that in place. I just wanted to put that in there, because I know that it’s a real struggle for parents to get those diagnoses. We fought every year to get that, and that still ended up happening in our situation.

At 31, he’s an adult. He loves being an adult. We have individualized funding through CLBC. We’ve worked hard to get where we are. Things are good.

[5:15 p.m.]

I’m here speaking as a parent, but I’m also here speaking as a former education assistant in the school district in Quesnel.

Autism funding is great for people that qualify for autism. There are so many other kids out there that have other challenges. I’m not putting down the autism funding. It’s wonderful. But what about the kids that have multiple challenges? How are they supposed to find respite or support workers when autism funding is running upwards of $30 an hour? Where does that leave those kids? That’s a huge issue.

The early-years contract is scattered right now. I think that there are parents who don’t know which way to turn. They don’t know who’s holding those early-years contracts. So they’re trying to get services, and they don’t know which way to turn. Before, parents knew to go to the CDC. That has kind of changed now, so that’s a bit of a struggle.

The neurotypical challenges — FAS, ADHD, complex behaviours — are the ones that fall through the cracks. What broke my heart, as an education assistant — I worked with grades 8 and 9 — was to see these students coming in with some pretty severe behaviour. It was because they had been slipping through the cracks, still undiagnosed, still not getting any supports and services. Then it came out in the way of behaviour. It was really sad.

The highest population that falls into those cracks is Indigenous, and I think that that really needs to change. I really appreciate what has been said so far by the other speakers on that subject.

Right now they have STADD navigators in place, which have just been switched from the Ministry of Housing and Social Development into MCFD. Those navigators help families and individuals to transition into adulthood once they’ve gotten into grade 12. That’s great. But what we really need is to have those kinds of navigators to help families navigate just going from the early years into the school system. That’s what we really need too. I don’t like the fact that there’s that eligibility criteria. If you don’t qualify for CLBC services, you don’t get that STADD navigator, and that’s a huge problem too. What about all of those other challenges that we’re just addressing here tonight? Who’s going to help them navigate?

There is a shortage of behaviour interventionists, education assistants, teachers, speech and language, physio, occupational therapists, pediatricians, respite workers, early childhood educators — all professionals in the field who help kids. It’s a crisis. It’s all over the province, and it’s a population problem. The government needs to recognize that. They need to figure out a long-term plan. They need to actually do that pretty quick, because we’re already in that crisis. There are already people being hired that aren’t trained to fill positions such as teaching positions or behaviour intervention, respite.

My son is 31 years old, and I still have to look for and train and hire those people myself. So I don’t think that has changed, and it’s only going to get worse.

In closing, what I’d like to say is that I don’t think there should be any eligibility criteria at all, particularly in the early years. If a parent reaches out for help, they need help. Parents don’t reach out for help if they don’t need it. That is such a huge, huge barrier, especially for the more vulnerable families out there who have trauma. They come from a place of trauma, and that’s often where we see a lot of the diagnoses that we’re addressing tonight.

Can you imagine all the kids that would be able to be helped and all the families that would get the support they need if we just gave them the support that they are asking for while they waited for the diagnosis, while they waited for that criteria, so that they would be eligible for services?

That’s all I have to say.

N. Simons (Chair): You spoke with a lot of compassion and conviction, and that’s helpful for us to get the message. I appreciate that very much.

I look for questions from my colleagues.

R. Glumac: You mentioned that parents used to know to go to the CDC, and that that has changed. I just wonder if you’d elaborate on that.

B. Fallowfield: Well, my understanding is…. When my son was little, the CDC provided all of the services. That’s who you went to, and you knew that they would be able to guide you through how to get those supports and services. We were very fortunate to have them when my son was little, and they really did help us out a lot.

[5:20 p.m.]

Now the early-years contracts are changing. It’s not necessarily under the child development centres, so parents aren’t sure who holds those contracts or where to go to get supports and services.

N. Simons (Chair): It’s something that I’m concerned about as well.

M. Stilwell (Deputy Chair): Thank you, Bonnie, for speaking with such passion.

I’m just curious. You said the STADD navigators have been moved from Social Development to MCFD. I was the former minister who created STADD. It was my program. Obviously, it was something I was very passionate about. I also have a son who’s transitioning now, who’s graduating in June. It was one of those things that I created, and that’s the first I’ve heard that it’s been moved to MCFD. I don’t know if the critic knows anything about that. Where did you get that from? Enlighten me.

B. Fallowfield: Let me see, where did I get that from? I’ve talked to so many people in the last little while. I am thinking that I probably got it off of a Facebook page.

M. Stilwell (Deputy Chair): So let’s not believe everything that’s on the Internet.

B. Fallowfield: No, I’m pretty sure. I actually was involved in the very beginnings of STADD as well. I was on with Paula Grant when she was developing that committee, so I know the process that has happened, through that.

It has been switched now to under the Ministry of Children and Family Development.

L. Throness: I just wanted to follow up on one of the final comments, where you thought that there should not be any eligibility criteria at all. I’m just wondering how that would work. For example, if you think that your child has autism and is exhibiting signs of autism, then should the parent just be able to say, “Okay, I want $22,000,” or whatever it is, “for this year,” and it’s given without any other criteria, any official diagnosis?

How do you keep many parents from coming forward and saying…? There’s a moral hazard there, right? Any parent could just claim it. How do you run a rational program without any eligibility criteria?

B. Fallowfield: I think, for example, that the key workers, the intake workers that do work out of child development centers now, would be the perfect place for those parents to first go to. Those key workers, or intake workers, would do the intake to find out what it is that the parent needed, in the way of supports and services, and then guide them in the direction of getting those supports and services.

L. Throness: So they would essentially do the assessment, then? The assessment would simply divert to the CDC or whoever was doing the intake? There would be an assessment. There would be eligibility criteria. It would just go to different people.

B. Fallowfield: That’s what I would like to see change. I think that you have families that sit for three and four and five years on a wait-list during the early years. They age out. They’re in the school system. They’re on another wait-list. They’re lucky if they get to the top of that wait-list. You have to prioritize those wait-lists and those assessments as well. You see people graduating that have never been diagnosed. That’s the issue.

If we actually gave support and services to those families that reached out for support, if you had an intake worker or a key worker that was able to help navigate them to where they could access those services…. I think that there definitely would need to be some sort of guidelines around that, but I think that parents shouldn’t be forced to sit on wait-lists and never, ever get to access those services, and that’s the way it is now. That’s what I hope will change for the future.

N. Simons (Chair): Just to clarify, if I may. I don’t think the statement was so that they would be eligible for that specific amount of money, but for services — perhaps, general broader services, universal programs, as well as specific programs.

B. Fallowfield: Some parents might just need a parenting program. Other parents might need respite. There are so many services that are out there that are needed. As I said earlier, I firmly believe that parents don’t reach out and ask for help if they don’t need it.

R. Leonard: Thank you for your presentation and for sharing your lived experience with your son. I just wanted to, perhaps, put a little bit of light on the issue around early years, because I know this was a question that I faced in my community — around the funding.

[5:25 p.m.]

What I recalled, and we can check more into it…. My understanding is that the one particular program was not direct service. That was the service that was ended. That funding was then rolled back into providing more direct service and spread more throughout the province, because there were some communities that weren’t getting it at all, and this was a way for all communities to be able to benefit from the child development centres’ experiences and ability to provide service. That’s my understanding. It’s not that the CDCs are not still providing the kind of service that you experienced.

B. Fallowfield: That’s my understanding too — that they did spread it out so that it would be more accessible for smaller communities, which is great, but I still think that parents are confused about where to go.

In Prince George, there are a lot of parents that don’t know who the person is, who the organization is that’s holding that contract, so they just don’t know how to access it. There’s no go-to, even a phone number that they could phone to find that out. That would be great, if there were a hotline or something, right?

R. Leonard: Well, it’s good that you’ve expressed that too, to reinforce it. We have heard that, from just the previous speaker.

N. Simons (Chair): I’m glad you felt the need to present to us. I think that was good, and we really appreciate it.

B. Fallowfield: Thank you all for listening. I appreciate it.

R. Singh: Chair, can we have a two-minute break?

N. Simons (Chair): We can have a two-minute break. Yeah, sure, let’s have a two-minute break.

The committee recessed from 5:26 p.m. to 5:33 p.m.

[N. Simons in the chair.]

N. Simons (Chair): Thank you very much, committee, guests, witnesses and presenters. We’re back.

We are pleased to welcome four representatives from school district 57 — Barb Nichols, Sarah van Leeuwen, Olivia Jaswal and David Ki.

I give you the floor.

SCHOOL DISTRICT 57, PRINCE GEORGE

B. Nichols: Thank you. I’m going to start. I’m Barb Nichols, as you can see. I am one of the school district’s psychologists, and these are three of my colleagues.

We’re here because we just recently heard about this consultation process. We thought it was very important for us to give a submission because, as school psychologists, we do a lot of assessments and diagnoses, from kids entering kindergarten, all the way through school, and then transitioning to adulthood and sometimes adult services. We figured we might be able to give some perspective, some background and also answer or address some of the questions that the committee put forward.

[5:35 p.m.]

I’m just going to do a bit of an introduction. We are school psychologists who work in the school system. We do a lot of assessments, but we do a lot of other things as well. The Ministry of Education mandates our work to provide “collaborative consultation” — I’m just reading it; this comes from the manual — and assist with “pre-referral interventions.”

We provide ongoing collaborative planning. We often contribute to the design and evaluation of inclusive education plans. We provide in-service training to teachers and education assistants. We provide prevention and intervention programs and help to develop them and monitor them. We also — we wish we could do more of this — take good research and translate it into practice in our education system.

We also provide psychoeducational assessments. In general, that’s what we’re here to talk about.

Those psychoeducational assessments are pretty lengthy and comprehensive. We gather information from a variety of sources. We do interviews. We do observations. We look at children’s work samples. We do one-on-one testing. We ask people to complete rating scales of their observations and that sort of thing. We pull the information together, with the sole purpose of making things better for kids in our schools.

We also do some diagnoses. We diagnose intellectual disabilities, mild-moderate ranges, and also specific learning disorders: reading, spelling, math — that kind of stuff. With that, we often provide ongoing monitoring. Our recommendations, hopefully, will translate into a good plan. Then we like to go back and monitor to see how that’s going.

At present, we have 4.4 full-time-equivalents. We have a capacity for 7.0. We have had a hard time filling positions. It has probably been seven years since we’ve had a full complement. A couple of years ago, we went down to half our FTE allotment. Really, it provides a huge backlog, when we’re talking about trying to get to kids who need to be identified.

We have 4.4 school psychologists for a school district population of 13,000. That makes a ratio of one school psychologist to just under 3,000 students. We also serve a geographic area of 52,000 square kilometres. Two of us go to Mackenzie, Valemount and McBride as well.

That just gives you some context in terms of what we do and what we work with every day. Olivia is going to talk some more.

O. Jaswal: Our referrals come from schools. When parents and teachers have concerns about children, they use our school district’s collaborative problem-solving model to access consultation from us. It’s usually through this process that we take our referrals.

We also collaborate with our secondary schools to identify 16-year-olds who have already been diagnosed with intellectual disabilities, autism or FASD and who are eligible for reassessment as part of their transition from school to Community Living B.C. services. Currently because of our FTE problem, we estimate that between 50 and 75 percent of our caseload is reassessment of 16-year-olds for Community Living B.C. purposes, as part of established interministerial protocols.

The majority of children with mild to moderate intellectual disabilities are identified at school by school psychologists. This poses a challenge for schools and families, because we’re seeing a trend in our district toward later initial diagnosis of children with intellectual disabilities, due to chronic short-staffing and the prioritization of conducting repeat assessment of 16-year-olds with intellectual disabilities. We’re also having difficulty making space in our caseloads to assess and diagnose children with specific learning disorders in reading, mathematics and writing.

[5:40 p.m.]

For children with intellectual disabilities and their families, this means a loss of opportunity for early intervention services in schools and through community agencies contracted by MCFD’s child and youth with special needs program. Later diagnosis also has financial implications for many families, including income tax deductions and federal matching grants for registered disability savings plan contributions.

For teachers in schools, late identification of children who have intellectual disabilities carries with it the implication that support services and educational planning are less precise and more challenging to individualize in the time that they spend on our wait-lists. Let’s be clear. These wait-lists are years, not months.

Another challenge we’re facing as school psychologists is the expectation that we reassess all 16-year-olds who might be eligible for CLBC services, even when some of these children are so complex and show such profound communication delays that assessing them with standard IQ tests is way beyond the scope of our training and experience. It’s rare for these children to have previously seen a psychologist, and without a diagnosis, they’re not eligible for a referral to the provincial assessment centre.

We feel ethically stretched in these cases because there doesn’t seem to be an alternate, more specialized assessment pathway for these extraordinarily complex children. In order to improve access to services for families, we believe that having access to a tier 4 specialized assessment service would be of benefit. We also believe that we are not capable, at this point, of entering into any further interministerial protocols for providing assessments for other ministries.

We also suggest that in consideration of the current provincewide shortage of school psychologists, families should have another referral pathway available to them under another ministry’s umbrella. We are aware that not all school districts are providing assessments for CLBC, and this may be creating inequities between communities in our province.

In terms of post-assessment services, we have observed that some families of school-aged children with intellectual disabilities have difficulty accessing services because of intergenerational trauma. We suggest that in consideration of our history of residential school, the Sixties Scoop and the ongoing, high number of Indigenous children in care, there should be a service provision option that is separate from the Ministry of Child and Family Development.

Our final recommendation for improved services to families is the creation of a common set of literature outlining the services available, assessment referral pathways and contact information for families of children with special needs that all service providers across health, education and social services can distribute to families. That way, our recommendations aren’t piecemeal and missing pieces because of our lack of knowledge.

Thank you for taking our submission.

N. Simons (Chair): Thank you all very much. We have time for questions.

Teresa, I’ll start with you.

T. Wat: I just want to…. First of all, thank you for your presentation. This is something really new to me.

You are saying that psychologists are not really qualified enough or have enough training to assess a 16-year-old for Community Living?

O. Jaswal: That’s not what I said. Children with mild to moderate intellectual disabilities are well within our scope of practice. They are the majority of the children with intellectual disabilities. I was referring to children with profound intellectual disabilities, the ones whose communication delays make it impossible for them to respond to a standardized IQ test. Some registered psychologists have specialized training in this area, and they can use tests in different ways and provide those custom-made assessments that we are not trained to do.

S. van Leeuwen: We should clarify, too, that we’re called school psychologists. It’s an entirely different category than a clinical psychologist. That might be what you’re thinking of.

N. Simons (Chair): Can I ask who is asking? Is it CLBC asking the school psychologist to give them a diagnosis, or is it MCFD asking so that they can refer properly to CLBC? Not that it really matters that much.

O. Jaswal: In terms of the people who phone us, it’s often CYSN social workers. It can be parents who’ve been told that we provide these assessments.

We’ve been told, through our school district, that there’s an interministerial protocol, an agreement, that school psychologists do this work. But we do know that that’s not the case in all school districts.

N. Simons (Chair): Okay. Do you know if there are more than two ministries involved in that protocol?

[5:45 p.m.]

B. Nichols: Yes, there would have been…. At the time, it was Social Development, Ministry of Children and Family Development — MCFD — CLBC and the Ministry of Ed.

N. Simons (Chair): Okay, thank you.

O. Jaswal: Was Health in there too?

B. Nichols: Actually, the Ministry of Health was probably part of that as well.

N. Simons (Chair): Oh, thanks, Olivia.

L. Throness: Just a couple of questions. You have a real dilemma here. As I understand it, you don’t have a budget problem. You have a staff problem in that you just can’t find qualified staff to come to Prince George and do the job. Is that…?

O. Jaswal: It’s not unique to Prince George. It’s provincewide.

S. van Leeuwen: One of the aspects, though, is that we are…. Some districts pay a little bit more for their school psychs. We’re with the teachers in that contract, so that might be one of the recruitment and retention problems we face.

L. Throness: Okay. The other question I had was…. Up to 75 percent of your caseload is a reassessment of 16-year-olds. Why do they have to be reassessed if they’ve already been diagnosed?

O. Jaswal: That’s an excellent question.

N. Simons (Chair): Is that a question you were going to ask us?

O. Jaswal: Yes. It’s presumed that intellectual disabilities are lifelong, but eligibility criteria for CLBC states that the assessment information must be up to date, which is generally considered within five years.

N. Simons (Chair): So professional opinion, a knowledge of the individual doesn’t really matter. If they want a reassessment, they want a reassessment.

O. Jaswal: And there’s a specific form that needs to be completed along with it.

D. Ki: I think the problem is that even if we believe the student has an intellectual disability, let’s say, an individual with a third assessment…. This will be the upcoming, third, assessment. Then we’re pretty sure, based on information provided at school from teachers, we are certain that an individual has an intellectual disability. But, ethically, we cannot say that the individual still has an intellectual disability because the assessment information is outdated, right? CLBC needs…. In order to qualify for adult services, you need to complete the form, which forces us to update that assessment information.

M. Stilwell (Deputy Chair): Just to add to what they’re saying, it is about the eligibility criteria. When you look at how many young individuals are being diagnosed with autism, it doesn’t necessarily mean they qualify for CLBC’s services. They use the DSM-5, and they need an actual IQ, and they have to do the testing. It has to be up to date before you transition into CLBC funding. That’s why there’s the additional testing required.

B. Nichols: And it’s not always just individuals with intellectual disabilities. We also have that PSI piece, where we’re looking at reassessing kids with FASD and also ASD. Again, that’s what bulks our caseload.

O. Jaswal: And for children with autism spectrum disorder, in many cases, they’ve never had a psychological assessment because the health authorities don’t always provide it as part of their diagnostic package.

M. Stilwell (Deputy Chair): Because they might have been diagnosed when they were three or five.

N. Simons (Chair): Okay, thank you.

Teresa.

T. Wat: Actually, my issues were raised by Michelle already.

R. Leonard: Thank you so much for your presentation. You’ve really put the flesh on the bones for some of the things that we’ve been hearing around the different criteria and the need for better integration of services, because you’re living with those challenges. Just know that you are very much appreciated — that the challenges that you face are challenging for you too, on a daily basis.

N. Simons (Chair): We’re really glad to have this opportunity. We’re here, obviously — I said this before — because we don’t think things are perfect. Our goal is to try and improve the system, and what you’ve offered and what other witnesses today have offered are going to be helpful, as we deliberate and make recommendations to government. So thank you very much.

With that, Members, I will adjourn this committee meeting, with your unanimous approval, which seems to be forthcoming.

Thank you. We’re adjourned.

The committee adjourned at 5:49 p.m.