The committee met at 9:42 a.m.

[N. Simons in the chair.]

N. Simons (Chair): Thank you very much. Good morning, everyone. My name is Nicholas Simons. I’m the MLA for Powell River–Sunshine Coast and the Chair of the Select Standing Committee on Children and Youth. To my left is Michelle Stilwell. She’s the MLA for Parksville-Qualicum, and she’s the Deputy Chair.

We’re happy to be here in Nanaimo and grateful to the Coast Salish people, specifically the Snuneymuxw First Nation, on whose traditional territory this meeting is taking place.

On behalf of the committee, I would like to thank everyone who was able to make the time to meet with us today, recognizing that in the sector and with families and caregivers who work with children with neurodiverse abilities, sometimes time pressures are a fact of life. It’s difficult to make time. So we appreciate that, and we thank everyone who’s offered their insight into the important work that we’re doing.

Our committee is made up of MLAs from all parties, and part of our role is to raise awareness and understanding of our province’s child and youth–serving system. 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 our project by hearing from the Ministry of Children and Family Development, the Ministry of Health and Ministry of Education to learn more about how supports and services are currently structured.

This is our last public hearing for the week. We’ve been fortunate to hear from parents, caregivers and service providers about their experiences and recommendations for improving assessment and eligibility processes and services for children and youth with special needs. We will finish our public hearings by visiting Victoria and Surrey on June 3 and 4. Written submissions to our committee can be provided to us by the seventh of June, which is Friday.

You can learn more about this and other parliamentary committees at the Legislative Assembly website, looking under the parliamentary committee tab. We will 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 early fall.

Every one of our guests or registered speakers will have ten minutes to speak, followed by five minutes for questions from the committee. This time really does go fast. We’ve been trying to really keep it tight. So we’ll just give people a one-minute warning.

[9:45 a.m.]

Today’s meeting is being recorded and transcribed. All audio from our meeting is broadcast live via our website, and a complete transcript will also be posted.

At this point, I’d like my colleagues, committee members, to introduce themselves, starting with Rachna.

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

R. Leonard: I’m Ronna-Rae Leonard for Courtenay-Comox.

R. Glumac: I’m Rick Glumac for Port Moody–Coquitlam.

M. Stilwell (Deputy Chair): Michelle Stilwell, Parksville-Qualicum, north Nanaimo and the Deputy Chair.

L. Throness: Laurie Throness for Chilliwack-Kent.

T. Wat: Teresa Wat, Richmond North Centre.

N. Simons (Chair): Ellis Ross is currently on an impor­tant phone call, and he’ll be joining us soon. He represents Skeena.

I’d like to acknowledge that Sheila Malcolmson, MLA for Nanaimo, is in the room, and thank her for joining us this morning. We’ve had the pleasure of the company of other MLAs in Kelowna when we there yesterday.

Also, I’d like to point out that next to me is Jennifer Arril from the Clerk of Committees. That person over there is Stephanie Raymond. We’ve been travelling together. She’s with the Clerk’s office as well, and she keeps us organized.

Simon DeLaat and Amanda Heffelfinger are with us from Hansard Services. They are the visual representation of a team of people in Victoria who are transcribing our words for accuracy, and we thank them all for their service to the public.

Without further ado, I would like to call on Dominic Rockall, Nanaimo Child Development Centre.

Welcome to the committee. Good to have you.

Presentations on Children and Youth
with Neurodiverse Special Needs

NANAIMO CHILD DEVELOPMENT CENTRE

D. Rockall: Thank you for the opportunity to provide a submission to the Select Standing Committee on Children and Youth special project on children and youth with neurodiverse special needs.

My name is Dominic Rockall. I’m the executive director of the Nanaimo Child Development Centre. I also have a ten-year-old son who has autism spectrum disorder. Primarily, I’m speaking to you as a service provider, but naturally, my submission is informed by my experience as a parent.

The Nanaimo CDC is a non-profit society funded by the Ministry of Children and Family Development to provide individualized and group therapy services for children aged birth to 19. Our mandate is to ensure that all children have the opportunity to develop to their full potential. NCDC was founded in 1967, so it has been providing rehabilitative services to children with developmental delays and special needs in Nanaimo for 52 years.

In 2018, the CDC provided service to approximately 1,800 families. It’s got 65 employees, provides free public access to early intervention therapies, which include speech and language therapy, physiotherapy and occupational therapy. It also provides the infant development program for children aged zero to three and the supported child development program to support children in integrated daycares — children with special needs.

We also provide the autism–complex development assessments for the central and northern Vancouver Island region. These assessments provide access to, depending on the diagnosis, additional funding and services beyond the free public services that are available.

Currently on Vancouver Island, many children with neurodiverse needs are struggling to have their conditions both identified and properly addressed. The problem stems largely from the wait time to access both assessment services and the early intervention preschool therapy program.

I’ll start by addressing the issues of wait time for therapies. When I say early intervention therapy, again, I’m referring to speech therapy, occupational therapy and physiotherapy. These ministry-funded programs have an open referral system such that pediatricians, public health nurses, doctors can readily refer. Also, families can self-refer. This eligibility criteria is simply any concern about a developmental delay.

These programs are available so that concerned families can access specialists in the field of child development and, if appropriate, begin intervention in whatever program best meets their needs. The open referral and broad eligibility criteria for these programs creates a challenge in that the wait times are very long, because it’s so easy to get in.

[9:50 a.m.]

They have not had any significant investment for a long time, so the demand for service and the cost of operations have grown, which makes it difficult.

From 2008 to 2016, there was a freeze on base contract funding for these programs, and the sector has only had minor increases to base contract funding in the last two budgets. We know, from the evidence, there’s a critical window of opportunity we have, during these early years, to significantly impact a child’s development. Yet the specialized programs able to support children and youth with special needs don’t have the adequate resources to meet the demand.

This wait time and challenge to accessing public, free, intervention therapies also impacts the prompt identification of children that have neurodiverse special needs and subsequent assessments, as it means a longer time before these developmental specialists can see the children and identify early signs of disorders that might require an assessment. A parent might not be aware of a certain development that actually could be a sign of something that requires an assessment because the child might need funding at a future date. When they can’t get in to see the speech therapists and the experts that can tell them this, it’s just a longer time before the disorder gets identified.

Now I just want to talk about the assessment services and wait times for the actual assessments for autism and complex developmental disorders. Families of children with neurodevelopmental differences generally self-identify with concerns to doctors, agencies, schools in their communities. Once they do this, they’re often informed that they can’t receive targeted services or supports until they get an assessment and a diagnosis. This means families and caregivers have to seek out and participate in an assessment to gain entry into community and school programs.

The problem is that there’s a very long time to wait to get an assessment. At the CDC we’re working hard to reduce this wait time, but the current wait time for an autism assessment is roughly ten months. For complex developmental assessments, it’s over a year. That’s like FASD and other things. Adding to the wait time for assessments is the wait time for an appointment with a pediatrician. A pediatrician referral is a requirement for an FASD assessment or a complex developmental assessment, and the wait time for a pediatrician in Nanaimo is six months to a year. If you add that wait time to our wait time for an FASD assessment, you could be looking at a two-year wait for an FASD assessment in Nanaimo.

The implications of this wait time vary, depending on the age of the child and the disorder that is eventually diagnosed. I’ll just explain some of these implications. If you’re a child with autism spectrum disorder under the age of five, diagnosis means access to significant funding and extensive intervention. If you’re waiting for a diagnosis, that means you’re waiting for this intervention. An intervention at this time, under the age of five, for a child with autism is extremely important. They know that with extensive intervention, you can have a significant impact on the child’s later cognitive development.

Families of children over the age of five with complex needs or autism. Families and caregivers report to the CDC that many community agencies are not equipped to service children with neurodiverse needs. For example, child and youth mental health will frequently not treat children with complex or special needs because they’re not trained to deal with developmental challenges, so no mental health services will be available. The school district can’t categorize them into their funding designations without an assessment, so they can’t get extra support in school. Parks and rec staff are generally not sufficiently trained to manage children with neurodiverse developmental disabilities, so they can’t do recreation activities.

Many services providers, medical practitioners and community agencies are withholding their services pending the outcome of assessments and screens. This leads to a situation where complex children remain on multiple wait-lists but receive no focused interventions, which would make functional and developmental differences. Families are left on their own to manage whatever issues or behaviours the child might be exhibiting.

Another issue related to receiving an assessment and getting an assessment is that families and community partners are often confused about where to go to get assessments. At the CDC, we have a new program called family navigator, which has just been recently funded by MCFD.

[9:55 a.m.]

It’s a really useful program, because it helps people navigate through these complex systems and reduces them bouncing from agency to agency or trying to find out where to go — basically, more education, as I say. But the thing is, most families don’t know. The average family wouldn’t know that we have a family navigator, so education is needed about the whole piece of it.

As far as transitioning to adult services, transition planning is improving for children connecting with MCFD and child and youth special needs, but complex children who are not connected with the ministry or these services are receiving little to no transition supports. Parents and caregivers are left scrambling as medical access, mental health services and community programs are cut off. Many young adults sit in limbo, on wait-lists for new adult services, unsure of what they’re entitled to. Programs such as B.C. Children’s Hospital’s ON TRAC transition guide for medically complex children are underutilized and rarely recommended by doctors and pediatricians. There are systems out there. People don’t know about them.

Recommendations: increase investment into assessment services so that children and youth can be diagnosed with a shorter waiting period and at a younger age; develop a prioritization system for pediatrician access to shorten wait times for children waiting for assessment referrals; and increase investment in the family navigator model of service so that families and professionals have access to information about local resources, including assessments, eligibility criteria for programs and availability of programs. It can be a more effective wraparound model of care.

If we can limit the number of systems that families have to access to get where they need to go, and stop them from bouncing around unnecessarily, it’ll help both service providers and families. We need literacy-friendly, trauma-informed systems. Intake processes shouldn’t be complex and require a mountain of paperwork. This is also where a family navigator can help.

Also, significant new base contract funding for all foundational programs — by that, I mean early intervention programs for children and youth with special needs, with a focus on the EIT, early intervention programs; consider setting wait-time benchmarks, such as in health care, like a three-month maximum waiting period; and indexed annual increases to base contract funding for foundational programs, so that resources aren’t continually deteriorated by rising operational costs.

Thank you for the opportunity to provide this submission.

N. Simons (Chair): Thank you very much, Dominic. I appreciate your insight, obviously informed from more than just a professional and information. Some of the frustrations you probably talk about were some that you might have experienced yourself.

D. Rockall: We saw them coming. I’ve been in the sector for quite a while, so I was able to navigate around it. It was seven years ago when we got our diagnosis, so it wasn’t this. It’s worse now.

R. Glumac: Thanks for being here today and sharing your recommendations and your insight.

What do you think about the families that don’t fall under a certain classification but their children clearly have developmental challenges, and they need help? Putting all the reliance on an assessment — how would that help them?

D. Rockall: You’re talking about a child, say a preschool-age child with developmental delay?

R. Glumac: Yeah. There’s a variety of neurodiverse types of issues that may not be classified under autism. It may not be FASD. It may not be…. So without an assessment…. So basically, what you’re saying is put more money into assessments, but for these families, they basically will be stuck.

D. Rockall: Yeah. That’s another issue. Under the age of five, they’ll have access to all of the early intervention therapies, because it has very broad eligibility criteria. The speech therapy, occupational therapy, physiotherapy — they’ll have access to all of those, just like anyone else. Then over the age of five, as soon as they enter the school system, that support drops off dramatically. It’s kind of another issue, if you’re talking about the ongoing support. The school-age therapy, we call it. There’s very little school-age therapy available. We provide a little bit of it, through the school system, but there’s very little of that available.

[10:00 a.m.]

You could even talk about children that are just…. Anybody who doesn’t fall under the category of autism has significantly less access to resources. That’s a whole other discussion.

R. Glumac: Just a quick follow-up. You say that under the age of five, they will be eligible for all of these things. Is that…?

D. Rockall: Not as much as a child diagnosed with autism. They’re in their own category. But for everyone else, we have child development, early intervention therapies.

R. Glumac: Is that true across the province?

D. Rockall: Across the province. Those are the therapies I was talking about. They’re available. There’s still a wait time. Wait times are a bit long. But there are services.

L. Throness: Thank you for your presentation. You’ve touched on themes that we’ve heard a lot this week. You said that there are long wait times because it’s so easy to get in. Do we have like a doctor’s office problem, where people are going in with sniffles and they don’t really need care but they self-refer? Is that a problem?

D. Rockall: We screen. There’s a screening process. If that’s the case, they probably wouldn’t…. They would be advised that this is not the right place for them to be. That’s not really adding to the wait. It’s taking up a little bit of extra time, maybe, but that’s not adding to the wait-list.

L. Throness: Okay. You talked about underutilized systems, which is a surprise to me. Is there like a useless program that could be repurposed, in your view, that’s underutilized?

D. Rockall: No.

N. Simons (Chair): I didn’t hear that reference to a useless program. Can you clarify whether…?

L. Throness: What program is underutilized?

D. Rockall: ON TRAC, I was referring to in that sentence. Check out B.C. Children’s ON TRAC. It’s a great system. People don’t know about it, and doctors aren’t referring.

L. Throness: I see. Okay. Good.

N. Simons (Chair): We’re running out of time.

E. Ross: A real quick question on this subject.

N. Simons (Chair): Okay, Michelle, Rachna, then you. We’re already out of time.

M. Stilwell (Deputy Chair): I’m okay to pass. I can talk to Dominic off line. He’s in my community.

R. Singh: Just a quick question. What you have said, we have been hearing for the last three days. I just want to know, especially with the school-aged children, youths. We know that for zero to six, the services are accessible. But the funding is not if you’re not diagnosed — that $22,000 of funding.

D. Rockall: That’s just for children with autism.

R. Singh: Yes, with autism. I just want to know, especially with your own personal experience, when a child gets into the school system and the funding drops to $6,000, what are the challenges?

D. Rockall: Ah, ha ha. That’s a big question. The challenges aren’t with the funding, if you really want to get into it. The challenges are with the school system itself and its ability to support children with autism and other neurodiverse special needs. I believe it’s a training issue, capacity of the training of teachers and EAs. That’s where the root of the issue is.

I mean, outside of the school, the funding people get, it’s more funding than other people get. They’re able to have a speech therapist once a week, a little bit of extra support outside of the school system. The school system provides some speech therapy, like with other children. But the challenges, when they enter school age, are not around funding. There are other issues.

R. Singh: There are other challenges. Okay. Thank you so much.

E. Ross: You made an interesting comment about the lineup and the waiting list based on people that don’t…. How do I say this? The screening process — we’ve actually heard the other side, where a parent came in and said the screening process wasn’t good because it only took 20 minutes for them to determine that their child didn’t fit the category and that, therefore, their child isn’t eligible for services.

Do you get that a lot, with people that self-refer and say: “I don’t agree with your assessment”? If you do, what is the process after they get a diagnosis that says: “No, you don’t qualify”?

D. Rockall: Some parents will try multiple times to get the diagnosis of autism. So they’ll come back. Other parents with more resources will go to private psychologists to get a private assessment to try and get a diagnosis. Parents will keep hitting away at it.

I’m not a psychologist, but that’s a whole area of research and development. You’re talking about the accuracy of the screening process? Is that what you’re talking about?

E. Ross: Yeah.

[10:05 a.m.]

D. Rockall: Yeah, there’s a fellow named Dr. Dua who’s an expert on that. I wouldn’t want to get too much into that, but I recommend you talk to that person.

N. Simons (Chair): The Deputy has a question. I can’t turn her down. She’s the Deputy.

M. Stilwell (Deputy Chair): Just a question on that. Do you happen to know offhand if there are any statistics on how many parents are going for private assessments that get declined the actual autism diagnosis?

D. Rockall: No, I don’t have that. It might be out there. The question is: parents that are trying….

M. Stilwell (Deputy Chair): I’m just saying that if parents are not getting the diagnosis with the public assessment, so then they choose to pay for it, are they getting the assessment every time, which then triggers the funding?

D. Rockall: I’ve got some thoughts about that. It’s kind of anecdotal and hearsay, so I wouldn’t want to put a public statement about it. We could talk about it another time.

N. Simons (Chair): Fair enough. There you go, Michelle.

Thank you very much, Dominic. It’s really a pleasure to hear from you. Thank you very much for your time.

We’re going to go right on to Lynne Patrick from Speech and Hearing B.C.

Welcome to the table. Thank you for coming today. Go right ahead.

SPEECH AND HEARING B.C.

L. Patrick: Good morning. My name is Lynne Patrick, and I’m a speech-language pathologist. I’m director of early intervention speech services for Speech and Hearing B.C., which is the professional organization representing speech-language pathologists in our province. SLPs are part of the professional team surrounding children with neurodiverse challenges.

This morning I’d like to give you a provincial overview of speech-language services to toddlers and preschoolers in the province, with specific highlights on the implications for children with special and medically complex needs, some of whom, as you’ve already heard, may not receive a specific diagnosis until they’re in the school system.

The context. Children with obvious physical disabilities identified very early in life are seen by provincially mandated assessment teams, including a speech pathologist, and they are located in the Lower Mainland, Victoria, and as in autism assessments, sprinkled throughout the province. Post-assessment, these kids would access a speech pathologist in their home community via child development centres, as you heard from Dominic, or health unit speech pathologists.

The Ministry of Health and the Ministry of Children and Family Development fund together a total of 32.5 FTE for specialized diagnostic process speech services. Children with significant illnesses, those requiring long-term hospital stays…. There is a little bit of a gap here for their services. They may receive an assessment, but if they’re staying long-term in the hospital, they do not have access to long-term intervention while they’re in the hospital.

The majority of toddlers with less obvious symptoms access a speech-language pathologist, as Dominic said, through direct referral to the child development centre or the health unit speech pathologist. A speech pathologist would be involved, possibly, for several years and would be a key referral agent on the pathway to further diagnosis or accessing other supports and in transitioning to the school system.

Changing trends in childhood disability, researched in the U.S.A. over a decade, found an 11.8 percent decrease in the prevalence of childhood disability associated with physical health conditions and a 20.9 percent increase in disabilities associated with neurodevelopmental and mental health conditions, with the greatest percentage of increase, a 62 percent increase, in the prevalence in the under-six population.

Speech services for zero- to five-year-olds are a core service in public health. Health funds almost 90 FTE for speech pathologists, and MCFD funds close to 76 FTE, for a total of 165 FTE serving the entire province at the zero-to-five age.

[10:10 a.m.]

The expectation is, generally, that children with neuro­diverse needs go to the child development centre for their long-term intervention, but this is not always the case. Regionally things are managed kind of differently through­out the province. In some situations, there is no child development centre. Some child development centres don’t have an FTE for a speech pathologist.

Children who may not have the diagnosis or any diagnosis would usually see a speech pathologist at the health unit first. The community SLP may be the one to initiate the conversation about assessment for autism and may provide intervention as the family is going through that referral process, which can take, as Dominic said, a year or more from the time the conversation starts. A community SLP may have 10 to 15 percent of his or her caseload be children with suspected autism or with a diagnosis already. That’s at the preschool level.

Caseload size is currently the most problematic factor affecting timely and appropriate access to early intervention speech services. Professional recommendations for caseload size range from 25 to 40 children per full-time FTE. In B.C., approximately half of speech pathologists working with this population have caseloads of 80-plus children. Some speech pathologists are working at extreme levels of overcapacity of 100 to 200 children per FTE. Practically speaking, this makes working within any kind of professional wait-time guidelines impossible.

Wait-time guidelines, as Dominic said, are between zero and four months, taking into consideration the small window of intense brain development occurring in children from birth to three years of age. Large caseloads mean long, often cumulative waits of 12 months or more for families. It means reduced service or minimal consult only on a sporadic basis. It may mean group instead of individual speech therapy, as speech pathologists work diligently to see as many children as possible. It means some children will not see a speech pathologist prior to school entry.

With caseload numbers of 80 and more, it is very probable that only 20 to 30 percent of children are getting the intervention they need to make a difference in their lives. This was supported by a survey done in 2015 of preschool speech pathologists in the province. Five percent of the responding speech pathologists felt that they could give the majority of the children on their caseload what they would actually recommend — only 5 percent.

Most SLPs are extremely frustrated and distressed by this situation — the difference between what should be provided and what the situation actually is. How does one prioritize which of these children will get service when you know that early intervention can be life-changing for each one of them?

As far as referral, we did some review of that, and 90 percent of the referrals coming to health units, anyway, are appropriate referrals.

When publicly funded services are over capacity, families seek private practice speech pathologists as they can afford. Keeping in mind that speech services are underfunded in B.C. across the lifespan, wait-lists for SLPs in private services are growing exponentially as well.

The recommendations here from Speech and Hearing B.C. are for a significant increase in FTE for speech pathology services at the zero-to-five level within communities. That’s at child development centres and at health units. Doubling the current FTE would mean 165 new, full-time SLP positions in the province. Increasing SLP presence in the community should have an immediate effect on caseload size, resulting in faster access to speech pathologists and increased direct service hours and reducing the pressure on the school system SLPs, who are working with large caseloads as well — 100 children per FTE.

[10:15 a.m.]

Finally, health unit and CDC employers may be increasingly able to attract and retain SLPs due to ethically manageable caseloads, thus decreasing professional burnout and migration of SLPs to the private sector or other provinces.

Timely and appropriate intervention at an early age of development has an incomparably far-reaching impact. We have created a good foundation for service in this province and can build on what we’ve got. At this earliest point of entry, these dollars have the deepest impact on fast-developing brain structures and, as a result, the furthest reach in the trajectory of a child’s life. Children with significant and complex needs are, directly and indirectly, casualties of this currently overwhelmed system to provide speech services. We need to change this.

Thanks for the opportunity.

N. Simons (Chair): Thank you very much, Lynne. We really appreciate your expertise and your insight. We’ve heard some of those themes, as we’ll hear….

We have one question already.

M. Stilwell (Deputy Chair): Thank you, Lynne, for your explanation of the current situation across the province.

You mentioned that 105 FTEs are what you believe are needed.

N. Simons (Chair): It’s 165.

L. Patrick: So 165 would double the current FTE.

M. Stilwell (Deputy Chair): Do they exist? Where are you going to find them? Are the professionals already out there? Do we have a pool of SLPs to choose from if we were to actually increase that funding?

L. Patrick: It’s a super-good question. Maybe. Maybe not. We have 36 seats for training speech pathologists at UBC. That was bumped up in about 2014, 2016. It was bumped up to 36. We could use more.

N. Simons (Chair): Are there no training programs in other parts of the province?

L. Patrick: In all of Canada, there are five or six universities that train speech pathologists. It’s a master’s program. British Columbia is lucky to have one.

T. Wat: Thank you for providing such a comprehensive picture of the speech pathologists to us, Lynne.

I have two questions. The first one is…. It looks like we have been understaffed for quite some time. How long has this existed? The second question is: in case the government is going to apply for funding to increase the number of speech pathologists, do we have trouble recruiting speech pathologists to B.C.? How is the pay scale for speech pathologists compared with those of other provinces in Canada?

L. Patrick: That’s a really good question. There was recently…. Our national association did a salary and benefits survey which they released last year. The median salary across Canada is $80,000.

The first question you asked was: how long has this situation been going on? I have worked in three provinces as a speech pathologist at the preschool level for 22 years, and for my entire career children have been waiting for speech services. I don’t know what it has been like in British Columbia for a long time, but I understand that it has been hard to obtain funding specifically for speech pathology positions.

I have understood and heard from people at higher levels of employment — you know, employer levels — that it needs to be specified for speech services. Otherwise, for example, there are so many crises in health, in public health. Public health will direct funding that they receive to the crises. I mean, it’s hard.

I forget what the last part of your question was.

T. Wat: The pay scale. How is the pay scale?

[10:20 a.m.]

L. Patrick: Pay scale, right. Compared provincially, kind of in the middle. Alberta provides more. School districts provide more than health units, for example. School districts also have more, let’s say, holiday time away from the stress of the workload. There are lots of factors to consider.

Speech pathologists love their work. The survey mentioned that 34 percent of speech pathologists that responded — this was across Canada — had looked for other employment in the past year. About 10 percent are getting ready to retire in the next five years. Some people have called it a crisis.

N. Simons (Chair): Laurie, you have a question.

L. Throness: Yes. There are, obviously, a number of private speech pathologists outside of the 165 that the public funds. Do you know how many there are? I guess we graduate about 36, maybe — or on average, about 30 — a year over the past number of years. There ought to be hundreds and hundreds of speech pathologists in B.C. Do we have a brain drain to other provinces and the States?

L. Patrick: Yes, lots of speech pathologists will go to other provinces if they can get a higher starting wage, for example. Wages don’t change very much after the first five years or six years in publicly funded systems. It’s a profession that is sprinkled throughout, so at any given agency, you won’t have a huge number. So yes, there are issues with wage scales and…. Remind me again.

L. Throness: How many private ones would you say there are?

L. Patrick: Private practice — I don’t know. I don’t know that answer. I’m not exactly sure how to find out that answer because, although I could ask in terms of registration at our professional organization, our organization is a voluntary organization. It’s not the one that mandates work ability.

N. Simons (Chair): Who regulates this SLP?

L. Patrick: The College of Speech and Hearing Professionals of British Columbia. Now, their database doesn’t necessarily count that either.

N. Simons (Chair): That’s a challenge, then, I guess.

L. Patrick: It is, yeah.

N. Simons (Chair): Rick has a question.

R. Glumac: You quoted some stats on caseloads. I’m wondering: is this data available, around caseloads for publicly funded SLPs and wait times?

L. Patrick: Yes, I have included the references in the handout that you have. So there’s a pediatric therapies….

J. Arril (Committee Clerk): Did you send it electronically?

L. Patrick: I did send it electronically, yes.

N. Simons (Chair): Well, Lynne, thank you so much for your input. I’m looking forward to reading your submission as well. Just so you know, we recognize that we undertook this project knowing that we would be hearing things that don’t indicate everything is good. But our hope is that we might have some positive influence on policy. So thank you for your participation.

L. Patrick: Really appreciate the work you’re doing.

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

Okay, committee members. We’re moving on to Violet Shade.

Violet, come on up. Thank you for coming. I’ll give you a minute warning to try to keep on track. I’m really having struggles.

VIOLET SHADE

V. Shade: I would like acknowledge that I am on the unceded traditional territories of the Snuneymuxw people. Yo. Nugwa’a̱m Violet Shade. Hello, my name is Violet Shade, and I live on the Campbell River Indian band reserve in Campbell River with my husband and three children. I am a mother who has been a strong advocate for my children.

I have three children who have neurological and health challenges. My oldest son has autism, anxiety, asthma and a degenerative tremor. He’s also colour deficient. He is now 24. My second son has severe dyslexia, a language processing disorder and anxiety. He is now 20. My daughter has autism, anxiety, epilepsy and a joint flexibility disorder. She’s had quite a few concussions due to falls from epilepsy.

[10:25 a.m.]

I have experienced a misdiagnosis of my older son by a school psychologist — told he had health problems and: “Just go to your doctor, and get it seen to.” At that stage, I had no awareness of what autism was. I just knew there was something wrong with my son.

We moved from Nanaimo to Campbell River, and I accessed an autism assessment. At that time, you could go to your pediatrician, and he had his assessment through a pediatrician. When the assessment process changed, he was grandfathered in. I’ve experienced long waiting periods and lack of available services due to living in north Vancouver Island.

My oldest son and daughter were diagnosed what is considered late for autism. My oldest son was diagnosed when he was in grade 3 by the local pediatrician, which, at that time, was the assessment process. The assessment process changed, and I got notified he would be grandfathered in.

I contacted child and youth mental health, where he got his anxiety diagnosis. There was constant looking for supportive services, where there was no one to let you know where to go and who to see. Remember, I had two other children who also had challenging needs and who were undiagnosed at this stage.

My second son did not fit into any category. He’s what I consider in the grey area. We had him have an autism diagnosis, and he did not have autism. They did not refer me to where I could get help or what I could do to see what was wrong with my son.

I ended up going to child and youth mental health in Campbell River to get help. It was through them that Jesse, when he was seven, got an assessment from Queen Alexandra Centre in Victoria and was placed in the out-patients program. I went to Victoria every month for three years for him to access help. For me, that was a three and a half to four hour journey each way on a day trip, sometimes for 20 or 30 minutes.

He was diagnosed in the out-patients program at Queen Alexandra as having a language processing disorder. That means he has words at the back of his head, but he can’t get them out, which causes behavioural problems. In grade 5, he got his severe dyslexia diagnosis, which meant he had math, reading, writing and spelling disorders. I went in at kindergarten, saying that I am sure my son has dyslexia. It was unable to be diagnosed until grade 5, and that was through the help of Queen Alexandra children’s centre in Victoria.

He was constantly receiving help at school on the back of someone else’s diagnosis, as he didn’t fit into the required boxes and he didn’t fit into the diagnosis required for support. He went to years of counselling sessions that were supported through child and youth mental health, which were limited.

My daughter was not diagnosed with epilepsy, through her pediatrician or the doctor that we were seeing at the time, for years. She was diagnosed by a pediatric neurologist specialist in Victoria after having a seizure on a bus — and not being believed, when I went to the doctor. She was diagnosed with autism through Queen Alexandra Centre when she was in elementary school. I requested to go to Queen Alexandra Centre because I knew they would help me and would tell me what exactly was going on with my daughter.

[10:30 a.m.]

At that time, it didn’t matter where you went in B.C. The autism diagnosis process was the same. All the access that I was able to find had been off reserve — that I was somehow able to find myself. I was part of an autism family support group in Campbell River, where we tried, as best we could, to support each other and have an autism family camp once a year. But as happens with autism families, you end up falling apart and falling off, so that family group does not exist.

We’ve also had genetic testing done on our family, focusing on identifying the autism gene, through a geneticist from Victoria who is now retired. This genetic testing identified that both my oldest son and my daughter have an extra half chromosome, which adds to problems that they have.

My final comments. My children were not included in events. They suffered torment — and, in my oldest son’s case, severe bullying — through their entire elementary years. They were never invited anywhere to anything, and we as a family felt ostracized at times. There’s such a long wait for assessments, and quite often assessments done are deemed not valid after three years. So you have your child, and then you have to think about: “I need to get on the waiting list for three years to have this recognized again.”

My daughter had to have another assessment done — thankfully, through Children’s Hospital — in July of last year, as post-secondary education institutions do not recognize assessments older than three years and sometimes assessments done in grade 12 from the school psychologist, which happened in my son’s case, from a very well-recognized university.

It would be helpful that institutions requiring up-to-date assessments have a qualified assessor, instead of someone that works in their accessibility department, making medical decisions, which your child needs, of reassessment. I feel that it should be up to the institution to provide a qualified assessor that can go over the assessment and, if needed, request what part of the assessment needs to be done again, as often autism comes with other challenges. It does not go away; it’s a lifelong disability. I feel that that’s what it should be recognized as.

I have long volunteered on reserve at events and off reserve on PACs and DPACs for nearly 18 years. I have learned what works and what does not. I think sometimes too much is expected of schools to assess and provide support, as they’re just not able to provide all the support and assessments that parents require. There are a lot of parents, especially First Nations parents, who do not come forward, and I think we need better information that’s out there and about the institutions that do the assessments. It needs to get out there so that all people can access it.

Ǥilakas’la for allowing me the time to share our journey with you.

N. Simons (Chair): Thank you very much, Violet. I appreciate your sharing your story with us.

I believe Ellis has a question for you.

E. Ross: Yawc̓. Nug°a Ellis Ross, Haisla. We speak the same language. We have the same culture, along with the Rivers Inlet people. I know a lot of Campbell River people.

You bring up an interesting topic which I’ve always tried to address over the years. It’s a grey area. We’re talking about the fiduciary responsibility that Canada has to First Nations, but they always get a free ride. In your presentation, you talked about how you’d never been told of any Aboriginal support. Did you ask your band council as well as the native health authority for support? What was the answer?

[10:35 a.m.]

V. Shade: I was on a parents group on the reserve, and we did go to the Aboriginal parent gatherings each year. It was only through going there that I found I could have accessed Aboriginal support for them to come into the schools and advocate on my children’s behalf. Living in a northern town, we have very limited resources. We have very limited service providers. If you have one, you pay travel time for them to come and see you, or you travel out of town to go and see. There is not much support for challenged children, youth and adults on our reserve.

E. Ross: Is that through your band council, or is that through the health authority?

V. Shade: Yes, through the band council, the KDC, the Kwakiutl District Council, operates. I have accessed some things, but unless there are a lot of children or a lot of youth, the services that they provide are limited. It’s during Monday to Friday from eight to four.

E. Ross: This is a very complex situation. Very few people understand it, including First Nations. They don’t understand it. I’m trying to get at how these services come to you. Do they come through the school system, the health system? Or is specifically for on-reserve people?

V. Shade: Yes. I accessed some counselling through the on-reserve Kwakiutl district health. Everything else I have asked in the community and accessed off reserve through schools and services.

R. Leonard: Thank you so very much for travelling over two hours, I know, to come here and present to us today. We really appreciate hearing the personal stories. It helps us to get a real sense of what the challenges are and the hurdles that families have to go through, it sounds like — having three children and each time having different barriers to moving forward. How are they doing now? Your son is 24.

V. Shade: He’s actually a counter-tenor. At six, he wanted to be an opera singer. Always, if there’s an interest, I promote it. That’s what we did. We went to countless music lessons and piano lessons every day. He’s now nearing his last year at Kwantlen University. He will graduate, hopefully. It just seems like it’s been happening for a long time. He’s done a part-time program, but he will hopefully graduate with a bachelor in music performance, majoring in opera.

R. Leonard: That’s wonderful. Something I’ve been thinking about, too, as people have been presenting about their children, is their children’s perception as they’re growing up. You’ve shared, as many other parents have, about the isolation and the stigmatization. I’m curious about how they have adapted to those life circumstances.

V. Shade: We’re very supportive, and we participate a lot in our culture. My daughter has been part of a cultural dance group for many years now and has done many performances with the culture group. My second son has graduated with an Evergreen, and his last six months of school were done as work experience in the carving shed, because that was his interest. Not everybody is meant to go to post-secondary.

R. Leonard: No. Well, hands up to you.

N. Simons (Chair): Thank you so much, Violet. I really appreciate your taking the time to be here.

Okay, Members. We’re calling up to the table Tammy Aguilera from Tillicum Lelum Aboriginal Society.

Welcome to the committee. Thanks for being here.

TILLICUM LELUM ABORIGINAL SOCIETY

T. Aguilera: Thank you very much for having me. I feel honoured to witness Violet’s story of firsthand information from families.

Good morning, everyone. My name is Tammy Aguilera, and I work for Tillicum Lelum Aboriginal Friendship Centre. I would also like to begin by acknowledging the traditional land of the Snuneymuxw First Nation as a first-generation settler on these traditional lands. Acknowledging this is important in recognizing and positioning myself as an ally alongside the Indigenous people of Canada.

[10:40 a.m.]

To begin, some brief organizational facts. For those of you who don’t know, Aboriginal friendship centres’ mandates are to provide service to the urban Aboriginal population. That means individuals living off reserve. Friendship centres are not connected to and don’t receive any funding or operating dollars from First Nations bands. In B.C., there are 25 friendship centres. Nationally, there are 118. The majority of the programs are funded through grants and proposal writing.

Tillicum has been in operation for over 50 years. We offer over 60 programs, and I’d say that over half of those involve children and youth in some capacity. Additionally, many people don’t know that Tillicum Lelum has an open-door policy. We provide service to non-Indigenous families and work with individuals from many different backgrounds and ethnicities.

In the six years that I’ve worked with Tillicum Lelum, I’ve been a part of multiple programs such as our young moms’ transitional housing — short-term housing for moms involved with MCFD. I’ve coordinated our Building Better Babies program. It’s a pre- and post-natal program. I’ve worked with our youth safe house. It’s an emergency youth shelter for children and youth ages 12 to 18. I currently work with our daycare programs and our new Aboriginal head start program.

I’d like to say that what I’m sharing with you today is feedback from myself and my co-workers and families that we’ve worked with or trends that we have observed. Although in this presentation I’ll often talk about the deficits and the gaps in service, I think it’s also important to recognize that good work is being done in the community on a daily basis, and I raise my hands to those who are challenging the status quo.

To begin to explore today’s discussion topic of children with neurodiverse special needs, I think it’s important to gain clarity of what that looks like within the Indigenous community. Yes, it does involve children who experience autism and fetal alcohol spectrum. I think it’s also important to acknowledge that it would be children who have experienced trauma and who live their lives with complex trauma.

Considering the experiences of the Indigenous population in Canada with the residential school experience — the Sixties Scoop — intergenerational trauma and the amount of children living in the child welfare system currently, I’m sure you can imagine the amount of trauma that individuals are living with. On top of that, you would also think about children that may be experiencing FASD or autism as well as complex, compound trauma.

The most common thread that I have observed in the time I’ve spent working with families is an uncertainty or an inability to access service. We must gain an understanding of what the challenges are for families to engage in larger support systems as a result of structural racism and discrimination. I’ve observed on countless occasions, unfortunately, marginalized Indigenous families being treated unfairly and disrespectfully when looking for service outside of Aboriginal agencies.

I want to acknowledge that good work is being done. The true history of Canada is being owned, and the TRC is being completed. But change takes time, and it’s slow. It takes a long time for change to happen in large structural systems and make its way down to front-line workers.

Another barrier for families is due to the socioeconomic struggles that they face. I think these are things that people can only really understand if they’ve lived in poverty, such as not having a telephone to make a doctor’s appointment or receive a call back — there are often a lot of times that they need to call you back, not being able to receive that — not having access to transportation — even the bus costs money — or having to place your energy for that day into just finding enough food to feed your family.

I think the identification and referral of Indigenous children is often lacking cultural sensitivity and a trauma-informed lens. This has been reported by many families that we’ve worked with and in many programs. What I’m seeing now, in the daycare programs, is that a lot of children are being identified in early childhood settings. I have a background in early childhood, so my intention is not to criticize ECEs. I know that their work is undervalued and underpaid. However, families are being approached in quite punitive manners in daycares when children are identified with diverse abilities.

[10:45 a.m.]

The past three months in our daycare program have yielded four phone calls from families whose daycare spots have been terminated because the care providers don’t feel that they can provide enough support for the child. These are families that have already reached out and connected to the child development centre and have some supports in place.

I think, on a whole, we need to build the general public’s awareness of invisible disabilities and how to work with families. For Indigenous families that do make it through all these barriers, who do have a family doctor, which is another challenge in our community today, and eventually receive a referral to a pediatrician — sometimes they’ve had to wait up to two years — the current process for assessment is far too complex, overwhelming and prolonged.

In the early days of a pediatrician appointment, families are being overloaded with information. They’re being handed multiple checklists to have filled out by various care providers. Then they’re sent off with a time limit. It’s just too much for families to navigate. We are asking families with very limited resources to be able to manage difficult tasks that I think even typical mainstream families would have a hard time navigating.

In our recent experience in the Tillicum daycare programs, early intervention supports are working to be readily available. They are easy to connect with from the daycare. They are mindful of building trusting relationships with families. They are trying to use a trauma-informed lens, and they are referring to other community partners when appropriate. However, the feedback — and what I heard from the speech pathologist when I walked in — is the organizational challenges of finding and maintaining long-term qualified staff. Therefore, their wait-lists are extremely lengthy.

Tillicum Lelum offers what we call our Qeq college program. It’s a kindergarten transition program in partnership with the school district. This program is a four-week school readiness program for 40 children in two classrooms in July and August. The children experience a school setting, curriculum and routine within a culturally-attuned setting. The program coordinator then follows these children into their first year of school and gets to support the child, the family and the teachers. It’s been a very successful program.

However, what’s been observed from our coordinator of that program is that the children that are identified with neurodiversities are often facing the same or similar ap­proaches and strategies. A common practice within Nanaimo’s South End is for children’s school schedules to be reduced or limited to what educators are calling safety concerns. In many cases, children are being discharged from programs until medicated or until the following school year.

Again, it’s important to acknowledge that teachers, much like ECEs, are experiencing overwhelm, and they’re underresourced. However, I think about the increased stress that this places on families when a child is unable to attend school. Even furthermore, I consider the effect on the child — to be displaced, to have no sense of belonging amongst their peers and, again, increasing the amount of complex compound trauma.

What can be done? I think there are small steps that we can do to move towards better experiences for Indigenous children and families. I think, first of all, we need to create positions which support families in the way of immediate connection to a specialized worker, preferably within an Indigenous organization — a worker that can support families intensively from point A to point Z of the process, that can work with early intervention supports, that can coordinate practitioners, appointments. They can provide transportation and advocacy. If there are doctor’s appointments and assessments happening, they can attend those, gather the information and be an external support to keep families moving forward in a good way.

I also think that the access to pediatricians needs to be addressed. As we said, the current climate in Nanaimo’s health care is concerning. Lots of families don’t have doctors. The only way to receive a referral to a pediatrician is through your family doctor. These wait-lists are far too long. While the family is on a wait-list, the child’s needs are often not being met, and it just increases the complexity of the situation. We need to create quicker pathways for children with neurodiversities.

Finally, we need extensive and ongoing training in cultural sensitivity and trauma-informed practice for professionals on all levels of care, planning and policy and working with children with neurodiversities.

[10:50 a.m.]

Perhaps more important than the training is ensuring that well-suited staff are in appropriate positions, meaning finding individuals who are personally invested in learning about the importance of a trauma-informed lens, the value of culture and protocol and of Indigenous ways of knowing and being.

HÍSW̱ḴE. Many thanks for listening to my presentation.

N. Simons (Chair): Thank you very much, Tammy. It’s been a while since I visited the centre, but I do remember visiting Lelum. I was the former director of an agency.

R. Singh: Thank you so much, Tammy. Thank you so much for your passion and the way you describe the issues, especially for the most marginalized, vulnerable population. We have heard that before too. It’s very important that these voices are heard.

My concern is that we have heard stories about parents advocating and, even with those strong advocates that they are, the barriers that they are facing. You are talking about the people who don’t have a voice, who are so burdened by the issues that they have in their lives that they can’t even seek support.

What do you think needs to be done? I know you have made some suggestions about the support workers. But what about getting to these people, reaching out to them? How can we can do the outreach for these people?

T. Aguilera: That’s a big question.

I think it takes time, and I think it is happening. I do see a lot of empowerment in families and people through reconnecting to their culture and through rebuilding their culture. I think that we continue to focus on that piece — the cultural sensitivity — so that they can access services where they feel comfortable and that there are positions and people…. You’re not limited by mandates and constrained by what you can do for that family. If it’s, say, a special needs worker, you can meet with that family, and you can do all the pieces from A to Z to help them through. Does that answer your question?

R. Singh: It does.

E. Ross: This is the second presentation where I’ve heard about Indigenous children in this situation. Maybe this question’s not for you. Maybe it’s more for MCFD to answer. But do you have any perception of how many children…? What’s the ratio of First Nations versus non–First Nations children with neurodiversities?

T. Aguilera: With neurodiversities? I don’t have the statistics.

E. Ross: Yeah, that’s why I figured it’s not a question for you.

The second question is: has your organization applied for federal funding to actually address this so that programs could actually be complementary to what the province is offering or maybe even integrated with what the province is offering?

T. Aguilera: I would say probably not, to this point. We haven’t accessed funding specifically for this type of program. Not that we haven’t seen the problem before, but the daycare programs are relatively new to Tillicum. Building that zero to six early programming is relatively new. I think, with that, we’re really starting to see some of the bigger challenges that exist.

It’s something that I might suggest. We’re always applying for different initiatives and funding.

E. Ross: The only reason I ask is because it doesn’t matter if it’s off reserve or on reserve, the federal government has the responsibility to First Nations. This downloading to provincial government…. Maybe it’s a funding question that I’ve not aware of, and that’s another question for MCFD, possibly. But it seems that the federal government is missing here when we’re talking about Aboriginals on or off reserve.

T. Aguilera: There is a very big difference between the funding that we can access and the funding that a band can access, in my understanding.

E. Ross: If you get the support from the band, then you can access that funding.

T. Aguilera: We’re not connected to any band, though. Friendship centres work to support the Indigenous, the urban….

E. Ross: I understand that. But if you get the support…. My band supported your organization in Kitimat, and you guys got funding to actually open up an office in Kitimat. So I’m saying that if you get the support, you can actually access that funding.

T. Aguilera: Okay. Great.

L. Throness: I just wanted to clarify. I thought friendship centres were funded federally across Canada.

T. Aguilera: There is some federal funding, but it’s not from bands. We don’t receive funding from First Nations bands.

L. Throness: Right. So you do receive, as a federal agency, funding from MCFD as well.

T. Aguilera: We do.

L. Throness: You do coordinate with the province on that.

T. Aguilera: Absolutely.

L. Throness: Okay. I just wanted to clarify.

N. Simons (Chair): Now, not to be partisan, but I would point out that there was a significant increase in friendship centre funding recently. I think that in April it was announced.

[10:55 a.m.]

T. Aguilera: I think that’s become a bit of a discussion topic out there too — how that money is handed out and distributed. I think the money that Tillicum accesses from the Association of Aboriginal Friendship Centres is not a big portion of our annual funding.

N. Simons (Chair): Where is your funding…? How does your budget break down?

T. Aguilera: MCFD is one of our main funders.

N. Simons (Chair): That’s the province, right? That’s the province.

T. Aguilera: Yeah. Then there’s a ton of small grant proposals that we apply, some through health authorities but some from all different initiatives.

N. Simons (Chair): Depending on the sector.

T. Aguilera: Yeah.

N. Simons (Chair): Absolutely. You do cover a broad range of social programs and services. I appreciate what friendship centres do, and we really thank you for taking the time to tell us your perspective. You did a very succinct job.

Let’s call Erin Davies up for our next presentation.

Welcome. Thanks for being here. You go right ahead. I’ll just give you a one-minute note when we’re close to ten.

ERIN DAVIES

E. Davies: My name is Erin Davies. I’ve been involved with children with neurodiverse special needs for about 16 years. I’ve been a school teacher and a school administrator for most of that time. I currently work as a special education coordinator at a band-run school in Port Hardy on the north Island.

I’m not here primarily, though, as a school representative and definitely not as a band representative. I’m here mostly because I’m a parent of three adopted children, and they all have neurodiverse special needs. However, they’re all at different stages in accessing services and diagnostics and everything.

I had a lot of trouble condensing my….

N. Simons (Chair): It’s tough. It is tough.

E. Davies: I spend all day every day with children and youth with special needs. At work, I struggle. As a special education teacher, I provide pullout supports for kids that I really believe should be in the classroom.

I’m frustrated by a lot of our talk about inclusion and trauma-awareness. I don’t think that we’re doing it appropriately. I watch a lot of kids with neurodevelopmental diagnoses, and with special needs but without diagnoses, returning to crowded foster homes and insufficient support. I see a lot of caregiver burnout.

At my house, I do my best to provide adequate supervision to my two children who currently live at home. I have constant phone calls and emails to my oldest daughter, who’s in a specialized program in Campbell River, which is the closest place that she could receive these services.

I also feel an impending sense of dread that my daughter’s program will be over at the end of July, and she will be returning to a lifestyle that I’ll talk about a little bit later. It’s definitely not…. It’s not ideal.

I find it difficult to maintain a sense of optimism when I see so many children struggling, and our most vulnerable kids seem to have some pretty significant barriers. However, I would like to, today, focus my remarks on eligibility, because I think that’s where I’m seeing the biggest problems right now.

I think there’s a lot of room for improvement in service delivery, as well, and services offered. But I think the first priority should be making sure that kids who should be eligible are eligible.

In Port Hardy, where I live, the available services for children with neurodiverse special needs right now are mainly through schools and through the CYSN social worker. Some of our kids have been accessing support through child and youth mental health, and we have a couple of non-profits in our area, as well, that provide counselling and some family support programs.

Technically, we’re supposed to be able to access respite and special needs care agreements through MCFD, but that’s very challenging. We have a local Special Olympics team. Most of the families I know who are accessing adequate out-of-school support have children who have an autism diagnosis. But their children are still struggling significantly at school, and most of these families are non–First Nations.

Families who have children with other neurodevelopmental disorders, attachment or anxiety disorders or complex PTSD are not accessing resources well, in or out of school. These children are more likely to attend school part-time in our area and to drop out early. They usually need to access services through CYMH, Island Health or through the non-profit counselling services.

[11:00 a.m.]

Sometimes, like in my family, we end up receiving mandated services through youth justice.

I think that this fragmented system of service provision is difficult for families to navigate. It’s expensive to maintain. It doesn’t provide an adequate therapeutic network, which research has shown us is absolutely what children with neurodiverse special needs need, and it creates an environment where it’s very easy for children to be slipping through cracks.

Many families in our area have difficulty accessing quality before- and after-school care. Daycare and after-school care spots are difficult to find even for neurotypical children, and children with neurodevelopmental disorders are eligible for an aide through supported child development only until they turn six.

Some children with ASD diagnoses are able to use autism funds to hire after-school support workers or aides, and we do have a family support program in our area. They are only able to offer programs in one of our three main communities. Well, there are more than three main communities; there are smaller ones as well. They offer programs to each age group two afternoons a week, so it’s about four hours of service each.

Children with FASD or other neurodevelopmental disorders are often not accepted at daycares due to challenging behaviours. Many are either cared for by relatives or they’re just unsupervised after school.

I also find that accessing inclusive education has been challenging for children with neurodiverse needs in small towns. The diagnosis of neurodevelopmental disorder or FASD does entitle kids to an IEP so the school districts can access some additional funding, but this doesn’t really seem to be translating into a healthy school experience. Now, I’m talking mostly about public schools. I think that there are other people — I’m hoping there will be — who will be representing the situation in First Nations schools in B.C. as well.

In public schools, the EA support is very limited, and many children with special needs get little to no additional behavioural or academic support. Many of our schools are not safe places, both for children with special needs and for neurotypical children. Supervision before and after school is often done by people with limited relationships with children, and during recess and lunch, children will often play or eat lunch in their classrooms while one person is supervising a wing of a school, so children are basically alone.

This situation is similar on buses, where the bus driver is trying to drive and supervise at the same time. In our area, we don’t have separate special needs buses. Our general school bus has access for people with physical disabilities, but there are no accommodations for children with behavioural disabilities.

Many of our children with neurodiverse special needs have unusual or socially challenging behaviours, and they’re targets for bullies and gangs. Additionally, many children with special needs can be aggressive, touchy or impulsive, and they may overreact to challenging social situations. What I’ve seen as the result of this unsafe environment ranges from suspensions to expulsions, injuries, accidents and, in one memorable case in our area, a sexual assault. Even when nothing serious results from this lack of supervision, I think it still puts children into a position that they can’t manage and that always damages peer relationships and self-esteem.

In our community, we have three First Nations elementary schools, two public elementary schools and one independent Christian school, so families are constantly trying to shift their kids from one school to the next in the hope of accessing better services. However, this results in a fragmented education and a scramble to kind of put together a program for kids as they switch from school to school.

I was listening to the lady before me speaking about the VICAN process and accessing it. I do have a couple of quick comments about that — just that they can take quite a long time to be processed. I’m sure you know that. As a school employee, however, I find the VICAN reports really quite helpful when they do appear. They seem pretty good. Another problem I have with it is access to autism diagnosis for children with Indigenous backgrounds.

Then, there’s a service gap between infant development support and diagnoses that come through VICAN for FASD. We have kind of a little gap where our kids…. We may be able to stretch out supported development support until the end of kindergarten, but that’s kind of informal. After that, it’s usually another year or two before they can have an FASD diagnosis in place. That gives us two years in school without support.

[11:05 a.m.]

First Nations children are far less likely than the general population to receive a diagnosis of autism. In the public school my daughter attends, there are two children in her class of 28 with an ASD diagnosis. In the school where I work, there are 120 kids and no ASD diagnoses at all. I think that two of the barriers are the use of norm-referenced tests that don’t accurately represent Indigenous children’s experiences and the historically poor relationship between government service providers and agencies and Indigenous people.

One little thing I’d like to mention is that I work fairly closely with the First Nations Schools Association. I know that they’ve started to put together a team to support children with autism in band-run schools. At the moment, they have one specialist who’s attempting to provide care for all the kids who have a diagnosis already and then to support families who are attempting to access a diagnosis.

I think that the First Nations Schools Association’s goal is to create a team of their own, a multidisciplinary team that will ultimately be able to do those diagnoses. The First Nations Schools Association already has all of these specialists. We have a psychologist, an OT. We have everybody except the pediatricians.

I think that’s the barrier right now. If the provincial government was supporting that initiative with the First Nations Schools Association, I think that would be a really excellent thing. Schools have done a lot of the work to improve relationships with Indigenous communities, and I think that that would help a lot of kids get access to diagnosis.

I’d like…. Am I out of time?

N. Simons (Chair): Yeah.

E. Davies: Oh no. I haven’t even talked about my own kids.

N. Simons (Chair): You can do that. We just will have fewer minutes for questions. Go ahead.

E. Davies: All right. I have three adopted kids, and none of them are eligible for CYSN services. They were all affected in utero with marijuana and crack cocaine and, I believe, alcohol as well.

My youngest child was referred at age nine for VICAN. Her referral has finally been accepted, and she’ll do the assessments this summer. She’s 11. She’s never received any supports at school. She has been seeing a play therapist for two years. But we have a very long waiting list in our community, and despite the fact that it’s been quite successful, they’re closing her file to provide services for other children.

My middle child has a diagnosis of alcohol-related neuro­developmental disorder. It was diagnosed out of province by a geneticist. This disqualified him for an IEP, but he doesn’t qualify for CYSN. His IQ is too high. He also has diagnoses for ADHD, oppositional defiant disorder, specific learning disabilities, complex PTSD and reactive attachment disorder. None of these things qualifies him for CYSN.

He’s violent, aggressive, requires the supervision a toddler does, and he does not attend public school. He did for years, and it just didn’t work. He’s currently home-schooled by my mother. It’s been difficult. He is registered with SelfDesign, but it’s still difficult to access funding through them. They’ve actually started to question the diagnosis, because it was out of province. So now I’m going to need to re-refer him for VICAN, and we won’t be receiving services in that gap until I get the new diagnosis.

I do want to just quickly talk about my oldest daughter. She’s struggling quite a lot. She’s never received any diagnosis for neurodevelopmental special needs. However, early childhood trauma and prenatal exposure has had a devastating effect on her development. She has met the criteria for depression, reactive attachment disorder and complex PTSD. She’s refused all services from CYMH, so she basically has not received any services.

She’s 15 now. Since the age of 11, she’s alternated between living with me occasionally — not really anymore — and running away. She’s lived on the streets, and she sometimes lives in foster homes. She struggles with healthy family relationships, personal care, substance abuse, ongoing sexual relationships with adult males, fighting, making friends, academics, hoarding, self-mutilation, fake and real suicide threats and every other area of functioning that healthy children enjoy. Yet she doesn’t qualify as a child with special needs.

The CYMH coordinator in our area really likes closing files, and her file has been closed as well. Because my daughter has refused services, they’ve just closed her file. I’ve had a number of voluntary agreements with MCFD over the years. It’s been quite a nightmare. I’ve been accused of a lot of different things. At several points, I’ve been threatened with having my other children removed if I’m not able to provide adequate care for my daughter. Because if she keeps running away, there must be a reason.

[11:10 a.m.]

Her story is incredibly complicated. Basically, my point is that she has the most significant developmental needs of any child I’ve ever met. It’s mental health, but it’s developmental. It started when she was born. She is currently involved with the courts. She was sentenced to a full-time attendance program. There isn’t one in our community, so she’s 200 kilometres away. It has been a great program. John Howard Society has wonderful programs, but it’s six months, and it’ll be over soon.

I believe that our most glaring problem right now is with eligibility and our narrow definition of “special needs” that we support. I don’t think that we should be excluding children who’ve had adverse childhood experiences. I think that we need to consider early childhood trauma and severe anxiety disorders under the same umbrella for children and youth with special needs. I wish we could just provide support based on need, but we’re not going to be moving away from a medical model of resources any time soon. So I would just like to expand our definition a little bit more and try to include some more children.

N. Simons (Chair): Well, Erin, you’ve raised some issues in a really compelling way that complements what we’ve heard already, that services should be based on the need that’s presenting. I understand that, and I can’t imagine the frustration that you feel. I hope that you find advocacy from your MLA when necessary, and that if not, we can talk about other ways of advocating. It’s a challenge because MCFD is a difficult and large organization. I really appreciate your perspective. I look around, and I think you probably answered more questions than we could have asked in your discussion about your own kids.

I wondered if you receive from the ministry…. Was it a supportive adoption situation, or was it essentially an unsupported adoption in your case?

E. Davies: My children were adopted out of province, so it’s unsupported.

N. Simons (Chair): Right. I was wondering why the ministry would not accept the diagnosis that you received out of province. Was this not something that would be covered here or acceptable here?

E. Davies: School district 85 accepted it. But I’m not quite sure what’s going on. There are a lot of on-line schools right now, and I think because they’re sort of providing direct funding to families with special needs, they’re quite stringent about the requirements. I find it really, really hard to get them to pay for anything. Despite…. They kind of give you a budget, but it’s really hard to get them to pay.

N. Simons (Chair): Right. Well, really, I just want to repeat the appreciation of our committee for your telling us your story and your perspective from your professional and personal life. Thank you very much for that.

I’m going to call up the Comox Valley Child Development Association and Joanne Schroeder. Hello, Joanne.

J. Schroeder: Hello. How are you?

N. Simons (Chair): I’m pretty well. How are you doing?

J. Schroeder: I’m great, thank you.

N. Simons (Chair): Good. Thanks for coming today.

COMOX VALLEY
CHILD DEVELOPMENT ASSOCIATION

J. Schroeder: Thank you for your interest. Just sitting here for ten minutes, I can’t imagine what it must be like going around the province and hearing about the challenges that families are facing. I really appreciate the opportunity to contribute to your thinking about all of these very complex issues.

The Child Development Association in the Comox Valley has been providing services since 1974, so 45 years. We provide the core services. I’m sure you’re hearing lots about infant development, supported child development and pediatric therapies. We have some behaviour consultation therapies. We have a specific program that provides services to children who have experienced severe early childhood trauma using a specific model called the neurosequential model of therapeutics. We have the only centre-based autism program north of Nanaimo, in which we provide day programs to kids from Powell River, Campbell River and Port Hardy on site in the Comox Valley.

[11:15 a.m.]

I’m kind of dividing our services, for the purposes of this presentation, into two categories: the core-funded program — the ones that MCFD pays for on contract — and autism services, which, as you know, are provided on an individualized model. Hopefully, I can give you a little bit of flavour about what it’s like for the families that come to try and access services at our place. The funded programs are also of two types: one is the open referral programs; the other is gatekept by the local CYSN social work team. The ones that are open to anybody — parent, grandparent, public health nurse — to refer are what you’ll often hear about and, I’m sure, you’ve been hearing about: the foundational programs.

We have a nice position, not entirely unique, but somewhat unique in the province, called a family advocate position. When anybody phones our agency, they first speak to the family advocate. We established that position a couple of years ago, partially funded with government money but primarily funded with private foundation money.

When somebody calls and gets to speak to Beth, she’s able to make a preliminary assessment of the needs. The yin and the yang of the foundational programs is that they’re wide open for referral, which is great in many ways. Everybody is eligible, but it also means everybody is eligible. It’s really trying to figure out how we can provide those services that are the best fit for the family as quickly as we possibly can.

Sometimes it’s just a conversation with Beth that allows families to see that, yes, they have a bit of a developmental concern, but probably it’s within the normal range. They don’t actually even have to go through the intake process, start a referral. They don’t have to go on anybody’s wait-list. It allows us to do that preliminary screening of families, which has been really helpful.

All that being said, lots of children still need to access specialized services, and we just can’t accommodate them. I’m sure you’ve been hearing, everywhere you go, about the length of the wait-lists. They exist in the Comox Valley, as they do everywhere else in the province. When you think about it, it’s really just a simple math equation. Our population has boomed. We have way more kids, and the incidence of childhood disability has also boomed. Given that we haven’t had any significant increase in resources in about ten years now, there’s just no way that we can keep up with that.

We are trying now to provide an initial consultation to every child within three months, and we do hit that mark in the Comox Valley. But if they need to have ongoing therapy, they’re going to wait a year to have speech, OT — those kinds of things. That’s a pretty long time in the life of a preschooler.

The most troubling one for me is one that we’re always up against at this time of year: that we have to close referrals to kids who are going into kindergarten in September. As you can well imagine, families start to think, “Hey, is my kid actually ready for school?” and call us in droves around February, thinking about preparing their child for kindergarten. This year we had to completely close those referrals on the 31st of March, because we just couldn’t deal with them. So we’ve got this whole host of kids that are now going to enter kindergarten without any kind of consultation or support.

Quickly, on the CYSN-gated programs, there’s a bit of pro and con on that front. It’s wonderful to work with our CYSN social workers. They’re fantastic. If we can kind of get engaged with families with that team approach, it can make a real, big difference for families. On the other hand — again, something you’ve probably heard lots about — CYSN social workers are swamped. It just takes forever for them to make a referral, get a time to meet with the family. It actually slows down how quickly families can access services when they are open only to CYSN social workers to refer to.

A couple of recommendations for your consideration about core-funded programs. It’s no surprise that one of them is more money. We have to have a significant increase in our base funding and annual increases, particularly with a priority on the early intervention services.

[11:20 a.m.]

I used to work at a place called the human early learning partnership at UBC. I could show you books and books and books of research, as you well know, about the importance of early intervention and what happens to kids’ brains if we don’t intervene quickly enough.

The second recommendation that I have for you on that front is that every community have a family advocate, a navigator position that’s able to do that kind of preliminary screening for families, able to quickly link them to the best service for them. It doesn’t have to be based in one organization. I can imagine that in many smaller communities, even one the size of the Comox Valley, you could have a community-wide navigator that could fill that function fairly well.

Expansion of the age requirement for early intervention therapies. Allowing us to stay on to support kids as they go into kindergarten and sometimes even into grade 1, means that we’re really giving them a jump-start on that educational journey.

I think, on balance, I would recommend that the CYSN services not be gatekept by the ministry, that people be able to access them directly, in the way that they access all the rest of our services.

Quickly, on autism services, when I think about autism services, my heart really sinks. Because of our large, on-site program, these are the kids and families that I see every day. I’ve listened to very many stories about the challenges they face. I’ve listened to stories of people who are waiting for assessment, and I’ve listened to, sometimes, the saddest stories of people who have gotten assessments but have not received an autism diagnosis, in spite of the impact on their children.

The common thread across them: this system, around how we provide services for kids with autism, is badly broken. I can’t overemphasize that, in terms of how we look at it as service providers. It’s 18 months to get a VICAN assessment. If you live in the Comox Valley, you have to travel. It’s not easy for lots of families to access those things. GPs can actually refer for an autism assessment, as you might know. Most of them don’t feel confident to. We’ve been trying to work with our GPs around helping them understand that they can make that referral. Mostly, they are more comfortable referring first to the pediatrician. In our community, that’s a six-month wait before the pediatrician can make the referral to VICAN.

Private assessments are around $3,000 to $5,000, so for many families, that’s completely out of reach. Now, it’s about a three-month wait, even if you do have the $3,000 to $5,000 to get the private psycho-educational assessment.

It’s my belief — and it’s probably one that many of my colleagues would argue with, so I’ll just say that this is my opinion — that we’re probably never going to be able to provide enough resources to meet the demands for the assessments. We need to try to find a way to shift our service delivery model to respond to functional need rather than to diagnosis. I’m sure you’re hearing lots about that. The current system encourages families to seek diagnosis as their only way to access funding, and it creates a two-tiered model of service. There are lots of families whose kids have significant impacts and have no access to that kind of funding.

I know that you’re most interested in eligibility and assessment. I would just have to say a quick word about service delivery under the individualized funding model.

The amount of funding that parents have access to hasn’t increased in 18 years. It’s been the same since the court decision was made 18 years ago. With that, obviously, there have to be challenges around continuing to provide the amount of service to kids with autism. We contribute significantly — fundraised and gaming branch dollars — in order to make ends meet. You’re probably finding my colleagues in other parts of the province closing their autism programs because they can’t provide the services.

This year we are a unionized organization. HSA and the government negotiated a significant, well-deserved raise for all of our employees. Because of that, for the first time since we’ve offered the program in ten years, we have to increase fees for parents, which is a direct reduction in the service that they’ll be able to access. It’s either that or close the program. So we will be implementing an increase in fees for our autism program, starting on the first of July.

[11:25 a.m.]

Two final recommendations?

N. Simons (Chair): Sure, go. For sure.

J. Schroeder: More money. And try to find an alternative mechanism for funding autism services so that they can be core-funded in the way that all of the other services that we provide are funded, under contract to the government and also open to children who have the functional need but potentially not the diagnosis.

N. Simons (Chair): Thank you very much. We’ve heard arguments from all sides.

J. Schroeder: I’m sure.

N. Simons (Chair): It’s interesting. It’s an interesting debate within the sector. I think our challenge is to try to figure out what will work. I mean, part of our challenge is that we’re looking at provincial systems, and the systems seem to be not necessarily uniformly applied in all parts of the province. That’s the challenge that, I guess, we all face. But it’s very helpful information that you’ve provided us.

Rick has a question.

R. Glumac: I have a question about the family advocate. This came in a couple of years ago. Is that what you were saying?

J. Schroeder: Yeah.

R. Glumac: Have you noticed any reduction in wait-lists of any kind because of the work that the family advocate is doing? That’s my first question about that.

J. Schroeder: Yes. Definitely. Under the previous system, if a family would phone in and say: “My 18-month-old isn’t talking. I’m concerned,” without that initial screen, that family would go on the wait-list for SLP, for a speech therapist. Now Beth is able to talk it through, and often those people can just go and get some tips and that sort of stuff. So definitely.

R. Glumac: Do you have any statistics on that?

J. Schroeder: I do. Our wait-list is down for speech, particularly. Interestingly, speech is the one that was the highest, and it’s now the shortest. So people are waiting about four months for speech therapy, as compared to a year before we had the family advocate.

R. Glumac: So it went from a year down to four months.

Second question on that: is the family advocate also…? We’ve been hearing from many people that parents don’t know where to go to get services. Is the family advocate also helping families find services that are outside of your organization?

J. Schroeder: Yes. Definitely. That was one of the main reasons we put the position in place. We were finding that a lot of our families had some fairly basic needs — around housing, income, employment — that they were asking for help for from the therapist, which isn’t the best use of the therapist’s time. So now the family advocate can help people find a place to live or hook them up with the income assistance department — those kinds of things.

R. Glumac: That certainly sounds like a success story.

One other quick question. You mentioned that the CYSN services shouldn’t be gatekept. How would you envision that working differently?

J. Schroeder: Just that families would be able to come directly to us. Just one example of a CYSN gatekept service in our community is an after-school social skills group, basically, for teenagers with different kinds of developmental concerns. They could just come and get started in the program without having to wait for the referral from the social worker, because that just really slows things down.

There’s a whole other question around the CYSN eligibility piece, which I know you’ve also been considering. But even when the kids are CYSN eligible, that’s just an extra step that shouldn’t need to be there.

N. Simons (Chair): Good points.

L. Throness: Thank you for your presentation. I love the idea of the family advocate, as well, although that person is not delivering services. So that’s an FTE that could be crucial. Anyway….

J. Schroeder: She’s delivering some services in terms of just that basic family support.

L. Throness: Yes. For sure.

You said the incidence of child disability has boomed. Can you tell us, in your anecdotal experience, why you think that is?

J. Schroeder: Oh, golly.

N. Simons (Chair): You’re on the record here.

J. Schroeder: I mean, there are a whole bunch of reasons. A different level of awareness is one of them.

What kids are facing and what families are facing in terms of stress, I think, is a huge factor as well. It’s kind of an affliction of our time. If you ask people how they’re doing, they’re going to say they’re busy, they’re stressed, and they’re running from one place to another. Kids growing up in that kind of constant busyness, stress, anxiety — it’s just not good for their development.

[11:30 a.m.]

Where we’re seeing the big increase is around those mental health and anxiety disorders, including autism. In respect to autism, I mean, it’s got to be something in the water.

A Voice: And the food — GMOs.

J. Schroeder: There’s got to be an environmental reason. There are all kinds of other reasons why we’re now at the one in 47 mark in terms of kids with autism, in terms of our awareness and our efficiency at diagnosing, but there also have to be some environmental reasons that we’re just not getting.

R. Leonard: Thank you. It’s good to see you here. I feel so proud to have you sitting here. You’re from my community. I know that you house to the child care referral system. Earlier, we heard from another advocate around bringing the child care system into play with child development. I was wondering if you could comment on that, because you have some lived experience there.

J. Schroeder: Yes. I think it’s very valuable. There are all kinds of reasons, but I’m going to particularly draw on child care services for kids with extra needs, because that’s what you’re most interested in.

It’s been our experience of late that it’s almost impossible to find enough support workers to go into the child cares and support those kids that do have extra needs just because, as we all know, there is such a shortage of qualified ECEs in the province.

Linking the child development services more directly to the child care programs allows our staff, who have more expertise in some of these things, to train those ECEs directly and, in our vision, be able to minimize the number of support workers that are needed, so that everybody in the child care centre knows how to deal with kids with extra needs, and we don’t have to rely on there being just that one person who can make it possible for that kid to be in a child care setting.

Also, I think that so many of our families are not sure what the best kind of care is to get, so working along with the child care resource and referral folks, we can…. Where are the spaces available? That’s the biggest challenge now.

I have a nine-month-old granddaughter that’s waiting for care, by the way, if anybody knows a spot. That’s an aside.

N. Simons (Chair): Well, thank you very much. Now, that’s recorded, so we know that anyone listening….

J. Schroeder: I think it’s a really nice, important connection, because there are so many more kids with behaviour needs, more and more kids getting kicked out of child care settings, kicked out of preschool, kicked out of kindergarten because of their behaviour, and they’re not well supported. Marrying those folks up with child development professionals can make a big difference, I think.

N. Simons (Chair): That’s a good point to end on. Thank you so much, Joanne. I really appreciate your time.

Let’s call up Melanie Atwell. We’re almost on schedule.

Hi, Melanie. Welcome to the committee.

MELANIE ATWELL

M. Atwell: Thank you for having me. My name is Melanie Atwell. I am the executive director of a café out in Cedar. It’s called COCO Café. COCO stands for Cedar Opportunities Cooperative, and our mission is provide employment for people with developmental disabilities within their community.

I have a really unique perspective. I get to work with the adults coming out of the school system. This year my whole life has changed, because my son, who is five years old, entered kindergarten. Being a person who works with people with disabilities, I always kind of knew that there was something going on with my son, but I had a lot of strategies and techniques to work with it, and at home, we were okay.

When we went to intro to kindergarten last May, it was really obvious that my son was going to need help. He wasn’t like the other children in the class. I knew at that moment that I became a parent of a child with developmental disabilities, and I was going to have to start advocating for my child.

I talked to the school, and I voiced my concerns. I told them that I think that he’s going to need help. I immediately sought help. I went to my doctor. I asked for a placement or some sort of referral.

At that time, I was referred to the child development centre. My son was four. I waited two months for them to call me back, only to tell me that my son was starting kindergarten next year, so they were not able to help me. I didn’t understand it. It’s the child development centre. My son is four.

[11:35 a.m.]

But I had to keep going. I couldn’t stop there, so I went back to my doctor. I went alone this time, because the first time, she wasn’t very willing, and it was minimal effort placed. I wanted to have a real conversation with her. I asked her to spend some time with my son — “Can you give him 20 minutes?” — because our first appointment had been five.

She agreed. She had two kids my age. She thought that, because my son was affectionate and he made eye contact, there was no way that he had issues. Then she had a 20-minute conversation with him, and her opinion changed. I realized that if I hadn’t gone back after that five-minute conversation, he would still be in the spot that he was. She gave me a referral, finally, to a pediatrician.

Now, we were at about September, into the school year, because I started. The school has told me that if I don’t get a designation, he will not have help. Cut and dry. That’s the way it is. I said: “Okay. I’m doing my best.”

I wait a few more months, and I get a call from the pediatrician’s office. They give me a stack full of paperwork — not just for me. That would have been fine. “Get your teacher to fill this out. Get this person to fill this out.” So now, all of a sudden, I’m having to ask, again, for help. The teacher is willing to do it. But does she have time?

It took a few weeks. It was after Christmas holidays when I got that paperwork back. I finished mine and sent it off to the doctor’s. His appointment is for July 10. We’ve made it through the first year.

Unfortunately, two weeks before spring break, they decided that his classroom — kindergarten with 18 students — no longer needed the EA that had been there since the beginning of the year. As I walked my son into the school, his teacher met me with the class, heading down to bounce, and told me that I would go get him ready. “Bring him down, please. We no longer have an EA.”

I looked at her, and I said: “Oh my gosh. That’s going to be so difficult for you.” She responded by saying: “No, Zachary is the one who is going to suffer here.”

My heart broke. Do I bring him here? Is he going to have what he needs? I’m doing my best as a parent going into kindergarten to get the designation, but I’m waiting. My son is supposed to go there.

The next week his teacher is sick. So now we have four days with no teacher and with three different subs. There was kicking, biting and spitting. The classroom was out of control. There is another child in that class who probably should be designated. With none of them being designated, these subs were on their own. There was no one in that class that knew these children.

We’re in kindergarten. Something has to change. This stopping at four and then figuring out the system…. As a parent, I was lost. I was alone. Now I had to start from square one. I had been denied by the child development centre, and now I had to go into a system.

I think that there should be some sort of overlap into the kindergarten sector. When you go into kindergarten, those classrooms need help. That’s where we’re asking for some sort of help. The doctors need the teachers’ paperwork. So why isn’t it part of the process?

We can go back to the first day of school. We had three different classrooms in the first week, starting in two different areas, with teachers with sticky notes on their pads calling out names. Talk about a barrier for a child with autism but also for people with language barriers. We didn’t know where we were going. It was walking into chaos.

My experience in the school system is that the school district’s mission is inclusion. I know that’s in there. It’s in there to communicate with the families. I can tell you that there was no communication, even though I’d been communicating with them the whole time about having my son designated. Nobody told me that his support was going to be pulled. Nobody gave any sort of chance for us to regroup and figure out new strategies before it happened.

Then fast-forward to the week after spring break. I come, and I’m told that my child is back at square one. I don’t know what happened over spring break, but he’s at square one.

I can tell you what happened over spring break. Everything that you had given him, everything that was taught in that classroom and every support system was yanked out. The kids are back at square one. They don’t know what to do. He’s five years old. He’s in a scary environment. He was thriving, through it all, until that stage.

[11:40 a.m.]

What happened? Why was it pulled, and why was there absolutely no communication with me, even though I’ve told them? We’re stuck in this grey zone. Now my fear is: what if the doctor says he doesn’t have autism? What if it’s not autism? What if it’s some sort of neurological thing that he’s going to get no help for?

Now I live in fear, for the last nine months. What’s going to happen when I see this doctor? What are the key words that you have to say to get your child help? What is autism?

Thank you.

N. Simons (Chair): Well, Melanie, that was a…. You’re a very compelling speaker, and you tell a story that’s of great interest to us, on a personal level. On a professional level, as people who are partly responsible for policy development, you’ve told a story that’s easy to understand. Our task is to look for ways of trying to get those kind of things out of the system. I hope you followed up with the appropriate people in the education system. I know it probably didn’t provide a lot of reassurance or what have you.

Rick has a question; Rachna has a question. We’ll go from there.

R. Glumac: You are a very good speaker. Thank you for being here today. You said that you feel like there should be an overlap into kindergarten. I’m just wondering. The services that you had prior to kindergarten, how would you see that, if you could envision it?

M. Atwell: At his 18-months immunization, they asked me if he could talk. I said no. They said: “Are you concerned about that?” I said: “No, every child develops differently.” The next appointment with any sort of regulator, like your health authority and what is based from that, is at four years. It was too late. I made a mistake. I didn’t ask for the help at 18 months. I didn’t realize how severe it was until he was in a situation.

We’re a single-income family. My husband stays home with the kids. We can hardly afford to pay our hydro bill, let alone daycare or anything else. I believe in my job and what I do. I think that I make a difference. I think that I help people who struggle in our society, and I think that I showcase what people can overcome. I hear horror stories, from my employees, of their time in school. So I think that that makes me more aware of what I have to do to protect my son. I can’t afford private school. I need the school district to live up to its missions and values and to be inclusive.

I think when they have the proper support…. I know they are, at the end, going: “There’s no money for that. This isn’t there.” I understand that. I know that his kindergarten teacher is the most amazing teacher in the world and has helped him, but without support for her, there are 17 other kids there that need her help too. If they crossed over, there would be time, if there were some sort of screening process. I think there are probably more parents in this situation — where you don’t realize until you get into that system, when everything else is cut off. Now nobody is communicating through your early childhood care. I’m now looking into getting a new pediatrician.

I think if there were some sort of communication there, some sort of help and support in that, rather than just a teacher filling out paperwork, but also some understanding that not all the kids are going to be designated in kindergarten…. We need to help get them designated so that all the kids don’t suffer.

N. Simons (Chair): Very well said.

R. Singh: Thank you so much, Melanie. You spoke so well. I totally understand the frustration that you went through.

My concern is that when you said you first found out — your child was four — and you went to the child development centre, they said because he’s going to school next year, they’re not going to provide service. That is really a concern. Also, the concern is in the kindergarten, when the child is not diagnosed and the gaps they’re going through in that one year. Usually, as my understanding is, the services are zero to six. Then the kindergarten takes over. The school system takes over. That gap is very, very concerning for me — when there’s still a year left, and they simply deny. They did not give him any service?

M. Atwell: Nothing, no. I was told to go back to my doctor and seek a pediatrician. He was of school age. It was the day of my wedding, June 30 last year, when they called me.

R. Singh: I’m really sorry.

L. Throness: Just a quick question. You said that your son thrived in kindergarten until they pulled the EA?

[11:45 a.m.]

M. Atwell: Yes, he did. At first, he experienced a lot of anxiety going into the classroom. My son likes a bubble; he doesn’t like people in his space. There was another kid who was always in his space, so he created anxiety. With the EA there, being able to kind of separate and command, he was able to learn. He still can’t write, but he can sing the alphabet. He sings things. He learns through music. It’s really quite amazing to see what he’s learned. His class is very structured, very routine, which was absolutely phenomenal for him.

The second the EA was gone, it became chaos because the one teacher couldn’t take care of all of that. The bubble started getting burst, and the anxiety came back so heavy that I literally fight him every day to go to school now. I wonder: “Why is it so bad?” He says: “I’m scared.” That scares me, because it means that there isn’t enough supervision in the classroom for him to feel safe. I think we all need to feel safe to learn.

L. Throness: So the EA is really an effective, important position.

M. Atwell: Very, yes. Sometimes there should be two, especially in that early age, where it’s an unknown. These kids aren’t known by the school coming in. There isn’t another teacher to talk to about strategizing. This is first round.

N. Simons (Chair): Melanie, thank you so much for being here and for sharing your story. Thank you for the work you do in the community and at COCO’s and for the adults who work with you. It’s nice to hear.

Let me call Cindy Elliott up to the table — the one and only.

Nice to see you, Cindy.

A Powell Riverite, ladies and gentlemen.

Thanks for being here, Cindy. Thanks for coming all the way over.

CINDY ELLIOTT

C. Elliott: I very much appreciate being here today. By way of introduction, obviously I am from Powell River. I recently became a city councillor there.

I am a mother of five, grandmother to four. My youngest two children, I adopted out of the ministry. They both are high needs children. I grew up with a brother with Tourette’s syndrome. A cousin lived next door with epilepsy; he died young, unfortunately. His brain injuries, due to lack of oxygen, made him a very special needs child as well. My third daughter had learning disabilities and ADHD. My oldest daughter had undiagnosed ADHD until she was an adult and had gone all the way through school. I have multi years of experience with our school system and children who grow up with special needs, starting in the early 1990s until now. Things have changed, and not necessarily for the better.

I had meant to prepare handouts and a big, splashy presentation, and I simply didn’t have time. I have a lot on my plate. I took notes for the things that I really wanted to get across today. I hope that’s good enough.

N. Simons (Chair): I’ll give you a one-minute warning when we’re close to ten minutes.

C. Elliott: Yes. I realize I have a lot to say. It’s all critical to me and, I’m hoping, will be heard by you. I hope I can get it done it done in ten minutes.

N. Simons (Chair): If not, we can get further submissions later, just so you know.

C. Elliott: Thank you. I also belong to an advocacy group: Equitable Access to Education. I went there because I was struggling with my two new children, and they were super helpful to me. I see a need for advocacy groups like that to help us organize our thoughts and present them in a collective way. We are an unsupported, unfunded group. I think some support for groups like that would be excellent, because they serve a purpose that nobody else is doing. It’s a big, huge gap.

I’ve split my thoughts into two types of areas. One is things that are to do with school. The other is things to do with supporting families outside of schools. I’d like to start with the families-outside-of-school portion, just because I think it’s a little quicker. My experience with adopting my two young cousins let me see all kinds of systems that you have in place right now. My exposure to the advocacy group that I’m a part of has also let me hear a number of stories.

[11:50 a.m.]

What I wanted to maybe zero in on is that we seem to be a little bit discriminatory against families in our systems. The reason I say that is if you really need help, you have to give up your child to the ministry in order to get it, and that shouldn’t be.

If we have children whose parents could be good parents but don’t have the supports they need and, therefore, those children end up in systems that are disruptive and not good for them and create long-lasting, unfixable problems because of that disruption, we’re doing nobody any good. Currently our system is designed to only help kids if they’re not with their original families.

There is CYSN for specific, diagnosed issues. If CYSN’s mandate is to help families with children with special needs, then that’s what they should be doing. They shouldn’t be worried about whether the IQ is less than 70 or whether you have a formal diagnosis of autism. If your child is self-harming, if your child requires supervision 24-7, if your child has a sleep disorder and can’t sleep at night and keeps the entire family on edge all the time, that family needs help, and they need it right away. They don’t need to be sent to a year-long assessment waiting list to figure that out. They know, and the professionals that deal with them at the local level know.

We need to start taking the assessments at the local level and the people who know and acting on it without referring them into crazy queues. Crazy queues are great if they’re going to give added professional advice to refine things along the way. They’re not great if they keep people from the services that they need. So that’s my point around that.

I think post-adoption assistance for families who have adopted children out of the ministry is a really great thing. I think the administrative burden to access it is ridiculous. The social worker’s job should be to help you figure out what you need and help you get what you need. It shouldn’t be to put the onus back on the parent to figure out exactly what they should be applying for in post-adoption assistance and justify each and every single penny that they get.

There should be a multi-year plan for all children. There shouldn’t be this need for before 12, after 12, before five, before six. All children grow up through a multi-level of stages.

We can plan cities for 50 years in advance. I know this is not a hard thing to do. Why are we doing this transitional, crazy short-term stuff with all of our children? It’s not necessary, and it needs to be changed. So that’s my out-of-school stuff.

I’ve heard a lot of the other speakers here this morning talking about the length of time for assessments. It’s crazy. I’m not going to address that here. It needs to be fixed.

One of the things I’d like to see is…. Teachers know what they need. The special needs teachers in the schools know what they need. They have an idea of what the kids need. We need to start listening to them and implementing, based on what the professionals are telling us in the schools. We should not have to have some outside professional, one and a half years down the line, telling them what they needed a year and a half ago. That’s just silliness.

For example, my five-year-old grandson got an email from the school saying he can’t go on field trips because the teacher has decided he really does need an adult with him at all times, and she doesn’t have enough adults to take him on the field trip. Okay. So she knows what he needs. My daughter, rightfully, wrote back saying: “Yes, I believe that he does. I think your assessment is accurate. I’ve been telling you that for a while now. I really think that he deserves to go on the school trip and that the school should provide what he needs in order to go on the school trip.”

The principal wrote back: “He has no designation, therefore, no funding. We’ll keep him busy at the school while his class goes on a trip.” That was last week.

[11:55 a.m.]

Inclusion is the goal. That was her statement. She started out saying “inclusion is the goal.” We need to stop treating inclusion like some lofty, unattainable goal and make sure that it is actually what we do. If everybody in the school knows what my grandson needs to go on that trip, why are we stomping all over a five-year-old’s self-esteem and making him stay behind because his needs are higher than some of the other kids in his class? If it was a wheelchair he needed, we would give it to him, not make him stay home. But it’s not. It’s an adult he needs. He needs an adult. He’s five. Lots of five-year-olds need an adult.

That never happened in the ’90s. If your kid needed supervision, they figured out a way to do it. Back then we used to have the legal ability to have parents help out — older students, whatever. They never ever left the kids behind. They knew what they needed. They got it for them, and the kids went. That’s not happening anymore. Maybe that’s legal reasons. Maybe it’s because we’re all singularly focused on making sure who’s responsible for this, that or the other thing. I don’t know what the reason is exactly, but it’s all bad. It’s not working.

Inclusion has to be better. I would like to see special education training, for all teachers, part of the curriculum for teaching. My son, Daniel, was excluded from riding a bus because buses don’t have seatbelts and they don’t have adults other than the driver. The answer back to me was: “There’s a camera on the bus.” I’m, like: “How does that help Daniel?” That’s there to help the driver, not Daniel. That’s all about legal liability. That has nothing to do with helping children or protecting them, for that matter. It’s not protecting them from bullying from other students on the bus. It’s not protecting the students from chaos. It just doesn’t. That’s not helping, so why are we having buses for little children with no seatbelts and no adults on them?

At one point in time, way back when, they were multi-aged. Older kids watched out for the little kids. It worked a little better. We don’t do that anymore. I guess there’s a legal reason for that too.

N. Simons (Chair): We already have a question.

C. Elliott: One more piece.

N. Simons (Chair): Okay, sure. Go ahead.

C. Elliott: I recently ran into a young lady who lives in Powell River. Her son has autism. She can’t work because of the needs her son has. Her mother, a while back, bought a condo for her to live in, because she can’t really afford too much housing.

Her mother has had to retire and can no longer afford to maintain that home. Turns out that her daughter is not eligible for rental assistance because it’s her mother’s home she’s renting. Her mother has to sell her house out from underneath her autistic child in order for her to find a new place so that she can apply for rental assistance. Can you tell me how that is not discriminating against families? Last point.

N. Simons (Chair): Yeah. Make sure you phone the office about that. We’ll see if there’s something else. I haven’t heard about that.

Ellis, you have a question.

E. Ross: Yeah, that’s two points I hadn’t heard before. Discrimination against families. That’s a new one I hadn’t ever heard before.

The other one is…. I just want to clarify. Is it your understanding that the school will not allow the family to be included for activities associated with the child, say, on a volunteer basis — a mother, a father, a friend or a cousin coming in to actually supervise a child on a class trip? Is that the position of the school? Or is that just inferred?

C. Elliott: Well, this particular mom works a seasonal job and can’t afford to take time off during the busy season in order to accompany her son at school.

E. Ross: No. I’m saying: will the school…?

C. Elliott: No. I’m getting to that.

E. Ross: Okay.

C. Elliott: It isn’t my position that they wouldn’t allow family members to accompany. My point is that the onus seems to be on the family, rather than allowing parents in general to help out. There are often parent volunteers, but they cannot help out with somebody else’s child, except for in a casual kind of way.

They couldn’t say: “Can you just stick with my grandson on this trip? We need someone to hang out with this young man here, just to make sure that he doesn’t wander off, stays on track.”

[12:00 p.m.]

E. Ross: So the school doesn’t have a policy that says: “No, we won’t allow a family to come in to supervise a child on a class trip.” There’s no policy like that.

C. Elliott: Not that I am aware of, although some families with children with special needs have had strong advocacy activities affect their ability to attend school, yes. I haven’t experienced that in Powell River. But I know that I’ve heard stories of that nature in other parts of our province, yes.

N. Simons (Chair): Cindy, we’ve heard a few comments about the need for a family facilitator or a family advocate to help navigate — a family navigator. What are your thoughts on that, really quickly — having a navigator to help people access services? I know it wasn’t a focus of your discussion, but you did talk about the need for advocacy.

C. Elliott: I think advocacy for all of our disadvantaged groups is extremely important. I also sit on the board for Powell River Therapeutic Riding, and we provide therapy with horses for people who are disadvantaged. We have a volunteer coordinator as part of our organization that helps people figure out how to navigate and be part of our group. That’s not the case in all areas.

The disability tax credit alone requires advocacy. If you have a disability and require that tax credit, there’s no way you’re going to get it if you’re trying to do it yourself, particularly if it’s a mental impairment of any kind.

We have a veterans group that requires advocacy. I know your focus here is children. Children with neurodevelopmental needs — particularly, in my opinion, FAS — require advocacy way more than what they’re getting. Autism needs to do better. They’re getting their ducks in a row, and they have a lot of advocacy going on that seems to be effective compared to some other groups. I’m not saying they’re there by any means.

If you have a child, such as mine, that exhibits sleep problems…. He left school twice in the last month and went home. He gets extremely upset when things aren’t the way he expects them to be. He’s incredibly cute. He loves people. He’s social. So nobody believes him to be autistic, yet he still exhibits many of the same symptoms.

He is diagnosed with FAS. He is not eligible for CYSN. He is not eligible for many of the supports because…. So then we’ve got parents saying: “Well, I want an autism diagnosis, because at least then I know what I get.” But he’s not autistic.

N. Simons (Chair): I don’t want to run out of time, because people are going to leave. We have an extra presentation.

Cindy, it’s really great to see you here. I’m really pleased that you put your thoughts on the record. My colleagues and I will be deliberating and thinking about what you’ve said. It’s most appreciated.

C. Elliott: Thank you so much for having me here today. I’m sorry we couldn’t have more time.

N. Simons (Chair): I know.

C. Elliott: I have a ton to tell you.

A Voice: Send it to us.

C. Elliott: I don’t have time to write it down. Did you see the list of things I’m trying to accomplish?

N. Simons (Chair): You’re doing great, Cindy. Thanks so much.

Let’s bring up Holly Breingan.

Holly, you’ve been here all morning observing. Now you have an opportunity to say some words, and I have ten minutes to offer you.

HOLLY BREINGAN

H. Breingan: Thank you. I wasn’t sure I was going to speak today. I’m not well spoken, but I’m going to give it my best shot. Thank you for the opportunity to share a bit of my journey.

I’m Holly Breingan, a single parent of two children. My daughter is 17 years old with neurodiverse abilities and complex health needs. But I’m here today to give a voice to the overwhelming issues of navigating the multiple systems, the lack of supports and the real issue of caregiver burnout. I’m tired, and I feel we don’t support families.

[12:05 p.m.]

My daughter has Down syndrome, a seizure disorder, Crohn’s disease, is 100 percent tube-fed and received an autism diagnosis at age 14. She also has anxiety and post-traumatic stress disorder. When you have a child with complex needs, it’s overwhelming and lonely. The whole family is under stress — financially, socially, emotionally, physically. Educational supports are all needed.

We’re transitioning to adulthood. CLBC has said that my child is complex — I agree — and will only fit in a supportive residential care facility, as her level of needs are so high. I want to keep her at home.

My question is: why are you not seeing me as a mom who has, for 17 years, done all the support of the high needs that they say she has? Why will funding be put into place for my daughter outside of care? If I put her into foster care, the foster family or whatever will get X number of dollars. Same with when and if she goes into this residential care, but not for me. I don’t get that same support for her to stay in care with me, in her family.

That’s my real reason for being here. We don’t fit into all these different places. In actuality, we fit into all of them. I haven’t been able to work for 17 years, since the day she was born. I also became a single parent.

There are many like me. We’re overwhelmed. We’re not here, because we’re looking after our kids. We don’t have enough support.

N. Simons (Chair): Well, Holly, I really am so pleased that you took whatever courage you needed to come up and speak to us.

I think, having heard other people, you realize that your situation is one that we need to hear about. I totally, totally agree. We don’t hear from a lot of caregivers, precisely because we know that they’re often overwhelmed with the daily expectations. For that reason, I just want you to know that we hear you, but we also hear the voices of the people that you represent, whether you know them or not.

We understand caregiver burnout. We’ve seen it. We’ve seen it in our communities, when we have elders looking after their partners — the loneliness and the burnout that comes with that. While our effort is to try to improve the system, we also want to make sure that people access the advocacy that is helpful. The last thing you need is to be scrounging around, looking for advocacy, because that just takes time too.

You make a very good case. I’m really pleased that we have had an opportunity to hear you. Hopefully, we can deliberate over the issue of caregiver support. I appreciate you taking the time.

L. Throness: Just one quick question for you. You talked about caregiver burnout, and I can understand why that would be. Your daughter will be around for many, many years in the future. If you were to be given residential support, how would that help with your burnout issue? Because you’ve been 17 years now, and it’s been very trying for you. Would that not continue? Can you go the distance, in the future?

H. Breingan: Well, that’s another issue. The presentation with CLBC was the fact that…. I actually phoned the advocates for the Representative for Children and Youth, because I didn’t feel that my first time with CLBC was respectful. The reason for that was that I don’t feel that I was heard.

[12:10 p.m.]

They presented the fact that transitioning youth are the highest priority other than children in care. But my problem with that is…. What they said was that she fits into only going into residential care. She could not be in a home share because the payment that a person gets with a home share would not do the amount of care that she needs for the cost that it is.

They asked what my ideas were. I said: “Well, I plan to have her at home until a later time that I feel I can no longer look after her.” My other child is 12, so I felt like…. He’s at home, and I would keep my daughter and my son until, possibly, my son moves, and then we would start a transition.

As well, I have a daughter that’s functioning at probably a six-year or less level. I don’t know how I would even bring her home for a visit when my son’s there. That’s her home. That’s where she thinks she lives. I can’t put her in a residential placement and have her come home and be like: “Well, Ezra’s still here. Why don’t I live here?” She really is simplistic that way.

The thing that bothers me is that then my decisions, I feel, are coercion and have to be based on fear because I was told that transitioning youth is the highest priority. If I choose to wait until the time that I feel is right for my family and for Emily to enter into residential care, then there might not be the placement, or I will be waiting. She will no longer be a priority.

That’s a problem. That’s a huge problem. Should I guarantee my spot now at 19, which isn’t the best for my family — for Emily, for anyone — or run the risk that there’s no placement for her or I’m waiting two years?

My other issue is: are you serious? There could be someone that’s, say, 35. Their mother is 70 and is needing that thing, but Emily, at 19, is going to take that spot over the person whose parent is now 70? If that’s the truth, that’s a messed-up system. You need to be doing it far more on needs-based and triage, or whatever you want to call it. We shouldn’t be forcing families, basically, into fear-based decisions. That’s craziness.

Not to mention that I’m still feeling like I need…. I also, even now, am trying to make a decision. Am I really getting enough support for my child? Would she really be better in foster care right now? I’m not getting…. I’m on income assistance. I would like to see financial support for myself for the amount of care. It’s 24-7. I can’t do anything. The small amount of respite is nothing. I have never had any counselling for myself.

The supports are unequal for someone that is caring for her as opposed to a family member. It’s not fair.

N. Simons (Chair): You expressed that very clearly. We have heard that a little bit before. Cindy, before you, talked about: how is it that my child will get help if they are under government care and not my own? I think that’s a really important thing that we’ll be deliberating on.

I just want to emphasize the importance of you speaking to us today. I hope you feel like…. I hope, eventually, that when we issue our report to the Legislature, you feel that you were heard, because we certainly heard you today.

H. Breingan: Thank you.

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

With that, committee members, we’ve deliberated. We’ve travelled. We’ve been all over the province this week.

To Hansard, here and there, and to the Clerk’s office, here and in Victoria, to all of those who came forward and told us of their perspective and shared their stories and were generous in doing so, I’d like to thank everyone.

To the committee members, on a rare week not in Victoria, I just want to thank you for your commitment to this committee and the important work we do.

The meeting is hereby adjourned.

The committee adjourned at 12:15 p.m.