The committee met at 4:20 p.m.

[N. Simons in the chair.]

N. Simons (Chair): Good afternoon, everybody. I’m Nicholas Simons. I’m the Chair of the Children and Youth Committee, and I’m the member of the Legislature for Powell River–Sunshine Coast. Speaking of sunshine, it’s a nice warm day here in Castlegar.

I’d like to thank you all for attending. We’re very pleased to be on the traditional territory of the Ktunaxa and Syilx and Sinixt peoples.

On behalf of the committee, I’d like to express our appreciation to everyone who’s able to make it to make time with us, especially families with children with special needs. We recognize that they often face additional pressures and challenges that make it difficult, sometimes, to share experiences with a committee and take the time out of their day. So I’d just like to knowledge those families and those who work with children and youth throughout our province.

Our committee is made up of members of the Legislature from all parties. Our role is to raise awareness about the child welfare and the child- and youth-serving systems in general. Our responsibility is to inform ourselves as well as to inform other legislators and the general public.

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 the Ministry of Education to learn more about how supports and services are currently structured.

We’ve been visiting communities across the province to hear from parents, caregivers, service providers and advocates about how assessment and eligibility processes and services can be improved. The committee is accepting written comments up until five o’clock on June 7. Any information is accessible on the Legislative Assembly of British Columbia website under “Parliamentary committees.” We, as a committee, will carefully consider all of the input we receive, and we will use it to make recommendations to the Legislative Assembly in a report, which will be released in early fall.

Each of our registered speakers will have ten minutes to speak, followed by five minutes for questions from the committee. Today’s meeting is being transcribed and recorded. All audio from our meetings is broadcast live via our website, and a complete transcript will also be posted.

At this point, I’d like to ask members of the committee to introduce themselves to all of you who are here visiting and those who are listening somewhere else.

I’ll start with Teresa.

T. Wat: My name is Teresa Wat, MLA for Richmond North Centre.

L. Throness: I’m Laurie Throness, MLA for Chilliwack-Kent.

M. Stilwell (Deputy Chair): I’m Michelle Stilwell, MLA for Parksville-Qualicum and Deputy Chair.

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

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

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

N. Simons (Chair): Also assisting us today are Jennifer Arril from the Clerk of Committees as well as Stephanie Raymond from the Clerk’s office. Joining us over there are Simon DeLaat and Amanda Heffelfinger from Hansard Services. There are people back in Victoria making sure they transcribe what we say, and we thank them as well.

Without further ado, our first presenter to this committee is ARC Programs Ltd. — Julie Robinson and Emma Cuell.

Just go ahead. I’ll give you a one-minute warning, maybe just raise my hand.

[4:25 p.m.]

Presentations on Children and Youth
with Neurodiverse Special Needs

ARC PROGRAMS

J. Robinson: Okay, all right. We’ve got a written statement.

Chairperson, committee members, MLAs…. I didn’t realize everybody was an MLA. It’s fantastic — representation of our legislation and staff. Thank you for coming to the Kootenays and taking time to listen to our thoughts on the needs of children and families in our region. We appreciate the opportunity to speak with you today.

My name is Julie Robinson.

E. Cuell: My name is Emma Cuell. I was placed at ARC Programs for my practicum while finishing my diploma in child and youth care. Since I started my diploma, I have realized how families, systems and policies can work together to ensure that I will never have full-time employment working with youth at risk.

J. Robinson: I have been active in service and advocacy for citizens who live with neurodiversity for over forty years. I started as a teen, developing inclusive summer camps, and I live it as a mother of an adult son with autism. I co-founded community service organizations and worked on developing autism policy for the Yukon government in the decade and a half that I lived there.

I now work as a family counsellor for ARC Programs here in the Kootenays. My position takes me to places like Sparwood, Greenwood, New Denver and Castlegar with families who are eligible for the children and youth with special needs, CYSN, services through the Ministry of Children and Family Development. I work with families who have children who have been diagnosed with either an intellectual disability; autism spectrum disorder, ASD; or a variety of other neurological differences.

Some of the families I work with are traditional — mom, pop and siblings living together. Others are single moms. Many are blended families. Many are grandparents. Some drive trucks. Some are teachers or bank managers. Others receive social assistance. Some reside in villages or larger centres. Others are in the country. Some are European. Others are Indigenous. The point being that all these families are different and are a true cross-section of our rural society.

For all these families, the needs are quite similar. I see it again and again in every family and variation of family structure. It boils down to three things: support for every member of the family; improving connection; and equity of access to diagnosis, treatment and support, both emotional and systemic.

In terms of comprehensive family support, I’ve never entered a family or a home where the child is living by themselves. Every child I am sent to provide service for lives in a context, and that context is a family.

E. Cuell: Parents are affected by having a child with a disability. Siblings are affected by having a brother or sister with a disability. It affects family dynamics at every level. It affects how families relate to their communities. The stress and pressure of being a caregiver often means loss of income, marital breakup, depression, withdrawal and despair. Families need help dealing with the systemic and caregiver trauma. They need disability-specific treatments, and they need intentional programming to reduce social isolation.

It doesn’t help that all of these profoundly affected children are not thoroughly diagnosed but are often given a cursory diagnosis, which always hampers their service options. This further complicates the parents’ struggle.

J. Robinson: After I spend my time with families each week and I leave, it’s the parents and the siblings that have to pick up the mantle of care and support in programming. But in my experience, this rarely happens.

E. Cuell: CYSN social worker and mental health clinician caseloads are often too large for the system to expect them to effectively case manage. Community organizations often have a limited time frame serving the family or have limited resources to offer comprehensive case management. So the practical reality is that case management usually falls on parents, who have very limited access to resources that individuals working in government departments may be aware of and have access to.

J. Robinson: Many families I have worked with are frustrated by this and, in my experience, are worn out to the point of exhaustion trying to navigate the system to help their child. Many families give up.

I think we all recognize that the very best intervention and the very best support a person can receive is from a healthy, strong family. It’s also, coincidentally, the most cost-effective save for the government — to offer supports to families. We need to be doing more to keep the entire family in mind when identifying and supporting people living with neurodiversity.

E. Cuell: That brings up another issue: connection. Support works in two directions, within the family and outside the family, which is what we’re talking about. It’s connection.

It’s heartbreaking to experience how disconnected, alone and isolated both individuals and their families are in our society. Without support, it’s hard for parents to continue the fight for their kids. Without an understanding ear, a smile or a hug from someone who has been there, it can be hard to continue.

[4:30 p.m.]

J. Robinson: In my 40 years of work, I have never seen depression, anxiety and isolation so widespread.

E. Cuell: Best-selling author Johann Hari recently wrote about addiction. He said: “The opposite of addiction is not sobriety. The opposite of addiction is connection.” The same is true for families and individuals living with neurodiversity. The opposite of loneliness, the opposite of depression, the opposite of despair is connection.

We need programs that help families simply connect with other families living similar lives. They need access to a network of groups and nearby support groups. We need to do a better job connecting youth living with neurodiversity to their school, their friends and their community. We need to have weekend programming for siblings to work out their issues and to simply be kids. Why aren’t we now?

J. Robinson: In our current practice of assuring near absolute confidentiality, no service provider is able to connect families in any informal way. I work with many families who know no other families that are in their similar situation. It’s not always the case that everybody knows everybody in small communities or regions — not anymore.

The result is that families have to tackle the challenge of each stage of their child’s and family’s journey starting from scratch — by trial and error, by research, by dumb luck — instead of with advice, knowledge and support from peers.

Parents need support from the moment they learn of their child’s diagnosis. We need to help these families connect with each other from the very beginning. The diagnosis process is, in fact, the perfect entry point for supports. Once a child is diagnosed, they should be connected through an intentional process that could include education and group counselling. Peer support is by far the most inexpensive counselling model and can vastly reduce family breakdown, systemic trauma, loneliness and suicide.

Right now, once a family receives a diagnosis from the IHCAN process, they’re left to their own devices to advocate for the programs that are recommended for their child. They have to figure out what is out there, what is hidden that’s out there, what works and what doesn’t. It’s a haphazard approach that actually makes things much difficult, causes more delays and prompts unnecessary pain and anguish to families.

I’ve found that programs, as outlined in the IHCAN for the child and family, are often abandoned for the lack of access to recommended therapy and programs, transportation funding and navigation support. The IHCAN ends up being a read-only document because there are no resources attached to the follow-through.

We need an independent process that follows up after the IHCAN to help parents interpret and advocate with the system for the recommended plan that’s in the IHCAN — someone who is assigned to help a family each step along the way.

As it stands, the IHCAN process results in a plan that has no traction to ever be implemented. Families who have severely affected neurodiverse children need help connecting to resources and other families. But they also need the same access to intensive supports and treatments that families affected by autism receive.

E. Cuell: Equality of access. That’s another issue. Families funded through B.C. Autism are supported with various programming opportunities, but many families are not funded through B.C. Autism funding. Families who have children who are severely compromised socially, emotionally and financially, need access to the same funding that families with children with autism have fought for and won.

This inequality of service for families has created a rift in the disability community, bringing up a feeling of the haves and the have-nots. Parents who have children with profound disabilities, who don’t qualify for the benefits that children who have ASD do, feel let down by the government. This adds to their isolation and stress. They often feel left out and angry that other families are receiving services that their children desperately need. Families need fair access to services that other families receive.

J. Robinson: If I might, I would like to tell you of a success story just next door. It’s not Alberta but north in the Yukon. When I lived there, I helped lobby for — and then we asked to help develop — policy, as it related to children with autism, and we were successful.

We also knew that there were other families out there that needed services. We went on to convince the government that the same support should be applied to other families of children with severe disabilities. In Yukon, we focused heavily on family connection, intentional programs that brought parents and guardians together and siblings together.

We did this in a variety of ways. When we did public education that related to disability and children, we always had weekend versions of the same program just for families. We provided ongoing retreats just for families, parents and siblings. We acknowledged the expertise the families bring to the solution.

[4:35 p.m.]

Yukon legislation was passed to allow these other families the same access to comprehensive services that include scientifically-tested interventions, counselling, OT, PT, recreational therapy — equal access.

In the end, the cost difference is not so much, especially when you consider the cost of not creating an equal-access service. Look at the cost of family breakup, of lost income, of fully institutionalizing individuals. The price tag of their care far exceeds the cost of providing the earliest possible extensive support treatment and services, helping families stay together and providing low-cost social and community supports that reduce long-term reliance on public-funded care.

It boils down to three things: support for every member of the family; improving connection to community; and equality of access to diagnosis, treatment and support, both emotional and systemic.

Thanks for listening.

N. Simons (Chair): Thank you very much for your presentation and for giving us more to think about as we deliberate. I really appreciate your comments and your insight from your experience.

I look to my colleagues, and I see Laurie has a question.

L. Throness: I thought your presentation was so insightful. I really appreciate the experience that you brought to the table.

I wanted to ask about the Yukon. The sentence says: “We were able to convince government that the same supports should be applied to other families who had children with severe disabilities.” Can you just elaborate on that a little bit? So if a family was receiving autism funding and another family had, say, an ADHD child, that family would receive the same funding as the one with autism?

J. Robinson: ADHD was not included in that.

L. Throness: But some other….

J. Robinson: If a child had FASD or a profound disability…. It could be a physical disability as well as an intellectual disability. But the chronology of it was, just like everywhere else, there was a group of families that worked together and changed the legislation for families that were experiencing autism. Then the other families were coming forward, and we worked together with them to basically include them in on the same legislation.

L. Throness: With regard to the absolute confidentially that you mentioned, I think that’s very insightful as well. How did you overcome that problem in the Yukon?

J. Robinson: Well, it is a smaller place. The Yukon is behind in some ways, in terms of everybody having to sign ten documents. That doesn’t happen in the Yukon yet. So it’s kind of a moderate ground. People do know each other, and families do come together. The families coming together has changed…. Well, it changed the legislation. But also, people knowing each other…. Small groups can form to deliver services as well. But it’s still a problem there too, as it is here.

I’ve been working at it so long. It’s just so crazy. I work now with a number of families that I’m actually not allowed to bring together. They are very similar. I can see the moms. I know they’re very similar. Their sons are very similar, and how that would be so enriching in their lives — not allowed.

L. Throness: Unbelievable.

J. Robinson: Because families aren’t brought together, right? The system doesn’t bring families together.

N. Simons (Chair): Can I just comment on that? We’ve heard from some people in other communities who talk about family support networks. They are family support networks. There is a place where families call, and they get together. They have social interactions and such. What prevents that from occurring?

J. Robinson: Systemic support, funding and the will of the system to not have it happen, sometimes. There’s control in getting together and being mobilized. Some of the confidentiality that I find happens because people don’t want people to get together and to come together, because historically, when people who are oppressed come together, then change happens. I think sometimes we don’t think it’s happening, but it does happen — that people are divided and people are not encouraged to come together.

M. Stilwell (Deputy Chair): I just want to thank you for a very succinct, well-written description.

[4:40 p.m.]

Especially, Emma, I really love your point of ensuring that you won’t have a full-time job in the future, because truly that is the goal for any support worker — to work yourself out of a job and allow the individual that you’re working with to live a full, independent life. That is the goal and the ultimate outcome. So I really like that.

Just in regard to your comparison to the Yukon and the legislation there. You talked about the cost difference. I know the Yukon, obviously, has a much smaller population — 33,000, perhaps.

J. Robinson: It’s 37,000.

M. Stilwell (Deputy Chair): Okay, 37,000. So very different to British Columbia. British Columbia also, geographically, is very large and vast, and the way we are able to deliver programs ultimately impacts the way things are done in our rural areas compared to our bigger centres.

I’m just wondering if you have any statistics — or can tell the committee where we can find those statistics — on the costs and how the benefit was there in the long run.

J. Robinson: I don’t have them at the tip of my tongue, but the Yukon government has a department now for children and youth with developmental disabilities.

The argument that you made was the same argument that we heard when we first were starting to try to help families get the comprehensive services. In the end, the government is doing it and has been doing it now for ten years, and we are noticing families being supported and doing way better.

It’s what I said. In the end, if you look at $50 million or $10 million…. Yeah, you can look at those numbers, but the cost of families breaking down and not being successful is really the end result of not doing the work. The inequality of some families not getting the services…. I work with a lot of families that have autism in their families, and I work with a lot of families that have neurodiversity in their family. The desperation when they find out that families with autism get some of the services that their children need….

I work with a young man right now with CHARGE syndrome. It’s a developmental disability that’s very comprehensive. There are lung and heart and developmental disabilities, and the prognosis of life is very short. Twenty years is an old person with CHARGE syndrome. He has a lot of profound behaviour issues, and he would really benefit from having applied behaviour analysis, but no go.

M. Stilwell (Deputy Chair): I’ll just follow up on that. I understand what you’re saying, absolutely. I am a mother of a child with autism. I’ve been through the system since he was diagnosed at three, with individualized funding being utilized throughout his years. He’s now aging out, graduating in June and going off to university, which is very exciting.

My point was simply that I understand what you’re saying, but it’s also how we measure success. When you’re saying: what is the cost and the benefit for the families afterwards…? When they get different forms of support or access to that support, it’s very hard to measure. Governments always want….

J. Robinson: Yeah, they want….

M. Stilwell (Deputy Chair): We’ve got to have the data.

J. Robinson: And that’s why it doesn’t happen — because there’s no data. But there is…. Well, I left the Yukon three years ago now. I’m not sure what they’ve done from then to now, and I didn’t check in before I did this presentation. But the cost is relative. They get transfer funds from the federal government, just like B.C. gets transfer funds, equitable to the amount of population they have, right? Maybe not. Okay, we won’t…. That’s another topic.

M. Stilwell (Deputy Chair): We’ll talk off line. I’ve got lots of things to say.

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

R. Glumac: Is there a child development centre in your region?

J. Robinson: There is. There’s a number of them, actually, in different communities.

R. Glumac: Someone we spoke to yesterday, I think — all the days are blending into one now — who’s been involved in this field for many, many years, said it used to be that the child development centres were the hub where parents could go. They would be able to direct them to where they needed to go and to help them with all the services that they needed.

Do you see that that kind of a model can come back? Is that something that is feasible? What do you think?

J. Robinson: A place where there are comprehensive services is always, in my opinion, preferred, but it’s nice to have alternatives as well.

[4:45 p.m.]

When autism funding came on board, there was a financial and social pull that happened because individuals set up businesses. It was a pull from services that were early intervention and child development centres, for sure. That was one of the issues that happened.

R. Glumac: So you’re saying that when the funding came in, there was a pull away from the child development centres.

J. Robinson: It all happened in child development centres before autism funding came on board, and now you have independent clinics that do ABA, OT/PT, that are not publicly funded in terms of having a board and a director. But it gives options for families too, so there’s some positive stuff that goes on with that. Before, it was a one-stop shop. Funding was just funnelled into child development centres, and that was the only place that you’d go. I’m a proponent of options, for sure.

R. Glumac: You’re a proponent of options, but what we keep hearing, and you’ve said yourself, is that families are left struggling to figure out where to go.

J. Robinson: True enough. If you’re going to have only one thing, a child development centre would be what I would…. You know, if you could only have one thing.

R. Glumac: Yeah, okay. Thank you.

L. Throness: One more quick question. Could you get around the problem of confidentiality by going to each family in the situation that you’ve described and asking for their written permission to start some kind of a connection group?

J. Robinson: You can, but the way that it works for funding and the way that the system works, there are lots of roadblocks to that. Rurally, with the work that I do, I have people in different communities too. That’s just a geographical issue.

You have to have resources to bring people together too, right? People like CYSN social workers have 50 or 100 people on their caseload. They haven’t got the mandate to do that either. Small organizations can apply for small, minuscule pieces of funding, like $5,000 or $10,000. But it needs comprehensive work to bring families together in a large way.

We have some good examples. The family network in the province is a fantastic organization, but it doesn’t have the funding to do the comprehensive work that needs to be done.

N. Simons (Chair): Thank you very much for your time. I really appreciate it. You can look forward to the report around fall. That is our goal.

Let me call up Gent Harrison. Come and introduce yourself to us, and then we’ll hear what you have to say. Thank you for coming, by the way.

KOOTENAY FAMILY PLACE

G. Harrison: Well, thanks for coming to Castlegar. My name is Gent Harrison. I am the speech-language pathologist who works with preschool-age children at Kootenay Family Place in Castlegar. We are the quasi CDC that we have in Castlegar. We’re not technically a child development centre, but we do have OT/PT, speech and some of the early intervention programs like SCD and IDP, so we are a bit of a one-stop shop for things in Castlegar. Like I said, I work with children from birth until they start kindergarten, and I’ve been working there for the last 4½ years.

With my caseload…. I’m the only speech pathologist at Kootenay Family Place, so I do everything communication-related, but children with neurodiverse special needs are part of my caseload. I’m often early on in the process, where parents will bring their kids in and say, “My two-year-old isn’t talking,” and then I get to sort of travel the process with them through to talking about: what’s going on? Why is that going on? So I have some experience with the whole IHCAN process, and I just want to talk to you about my experience with that.

I want to talk to you first about what I consider the pre-assessment, so before IHCAN. One of the things that I’ve noticed and I think would be helpful to have in a report is to think about if we can do some more education about the mindset around “wait and see.”

[4:50 p.m.]

Sometimes, I think, with parents and also with our referral sources, there’s a sense, especially in that two-to-3½ age group, where people want…. They don’t necessarily want to go ahead on what delays children might have. I hear sometimes from parents, saying: “Oh, my GP said: ‘Let’s just wait and see till they’re three.’” They’re not talking at two, but….

Interjection.

G. Harrison: Yeah, that’s exactly right. We want that early referral so that if there is a concern, we can start that process.

I mean, I don’t have the answers to what that education looks like, but I just think that it’s an area to try and get that message out that it’s…. I mean, I always say, “I’d much rather you refer your child at two,” and me say, “I think everything’s fine; don’t worry about it,” than for you to wait till three or 3½ and me go: “Oh, wow. We’re a little bit behind where we’d like to be in this process.” That’s the first piece.

The second piece, which is even a little bit bigger in my mind, is that once we do get those children and families in, and we talk about the concerns and why we think that they need to go through IHCAN…. That could be for autism, or it could be for developmental delay.

Once we get the family on board, the process itself just takes a long time. It’s really hard when we…. I counsel these families and say: “It’s so important we go early. We gotta go early. We need early intervention.” There’s all this funding, and that’s when the best results come, and then we wait 12 months for the assessment to come. It’s hard.

I recognize the system…. That’s not an easy fix, but I did want to come and just say that we see that and we feel that. With the decrease in funding that comes with aging out into school, there really are those key early years, and it’s hard to see…. Families are excited and ready, and as a team, we’re excited and ready to get some extra support.

I’m talking about children with autism, because unfortunately, as we’ve heard, there isn’t the funding support for some of those other neurodiverse special needs children. But for those children with autism, it is hard to see how long that process takes sometimes, especially…. Those kids are getting diagnosed at four, and they’ve got one year. I just think, “Oh, it would be nice if we could get those six months back,” because that can make a big difference.

Then the other piece that I wanted to talk about was, and it’s kind of what has already been discussed, just that gap between the funding that’s in place for children with autism — we get that autism diagnosis — and then those children who don’t get the autism funding diagnosis. It’s hard to…. It’s unfortunate that I can just lump it that easily, but that’s the reality that I see.

I see kids come into my office. I work with them, and I say: “Oh yeah, this kid — it looks like they have autism and I’m going to refer them.” Then I have other kids, and I think: “This kid has significant needs, significant developmental delay, but they’re probably not….” I’m still going to probably go through IHCAN too. But it’s just that feeling of: they’re not going to get the same support even though they may have huge needs. It just feels really unfair, and it feels hard to have those families come in and just know that for, I guess I want to say, bureaucratic reasons, their kids don’t get the same support that other people’s kids get.

I don’t come with easy answers, because I feel like this is a huge problem with the funding and all those doors that you’re going to have to look at. But I really want to stress that at a boots-on-the-ground level, that is the real issue that I see in this population of the neurodiverse special needs is that gap.

It’s great that we have the funding for the people with autism. I don’t want to take away from that. It’s just that the other kids need it too, and it’s really hard to deal with that every day and see that.

I tried to be quick. Those are my quick thoughts on this situation.

[4:55 p.m.]

N. Simons (Chair): That’s great. It gives us a chance to ask some questions too. Just so you know, part of what we’re trying to do…. We’re here because we recognize that there are things in this system that could be better. We’re hopeful that we can make recommendations that will work. So your input is very valuable.

Rick has a question.

R. Glumac: Thanks for coming here today. You’re saying that you’re sort of a de facto CDC and that there isn’t…. That means that you’re not funded by the ministry?

G. Harrison: Oh, sorry. We are funded by the ministry. I just mean that we don’t have the title as…. They used to have the CDC titles, I guess. I’ve only been here for four years. That was sort of dropped off, I understand, before my time. We do have ministry-funded programs, but we don’t have that title or the basket of resources that used to be considered as sort of a full CDC.

R. Glumac: Right. Do you see a way to address some of these challenges as being kind of going back to a model where, as was mentioned earlier, the child development centre was kind of the hub, and instead of providing funding to individual families so that they can try to figure things out on their own, the funding might be better served going to the child development centre so that they can provide the services, or at least be a central hub where they can refer people to other services? Maybe even make that a requirement, so that they have all the knowledge and can help the family navigate through the system that way.

It seems like, from what I’m hearing, there’s a real disconnect between all these different organizations and services. I’m just wondering what your thoughts are on sort of going back to something like that.

G. Harrison: That’s a really good question. My feeling is that the system we have right now — which is that families get their funding, and then they’re free to utilize private behaviour consultants and therapists if they want — is working for most of the families that I work with. I don’t know if that’s just because…. It seems like that has been working for them in terms of being able to access the services. I think more the challenge that I’ve seen is sort of getting it up and running. When they’re first sort of figuring it all out, it’s hard. I don’t know. I guess, maybe because I didn’t work in that previous system, it’s hard for me to know how much better that old system would be.

R. Glumac: But you’re saying that there’s a big gap right now for the children that don’t have a diagnosis for autism?

G. Harrison: Oh yes. Maybe I was misinterpreting your question. Yeah, you’re thinking that if we got rid of the…. If there wasn’t the special autism funding and all the funding was at the CDCs, then we could serve everyone’s needs. Is that what you’re asking?

R. Glumac: Well, yeah. I’m just wondering what your thoughts are on something like that.

G. Harrison: I think any system where we could be more equitable across all the children that have neurodiverse special needs would be an improvement over the way things are right now. If the funding were put into CDCs and we had the mandate to say yes — “We’re not going to say no because you have CHARGE syndrome or you have severe global developmental delay; we’re just going to give you the support that you need” — I think that would be a better system than what we have right now.

Children can come in with really high needs, and we at Kootenay Family Place will support them as much as we can, but there are these other kids that also come to Kootenay Family Place that get this extra. If CDCs were funded in a way that could eliminate that gap, then I think that would help.

N. Simons (Chair): Good. I’m glad that got clarified.

L. Throness: I appreciate your presentation today. You’re the only speech and language therapist in the region, as I understand it. Maybe there might be one other.

[5:00 p.m.]

G. Harrison: I’m the only preschool-aged, publicly funded speech pathologist in the area.

L. Throness: Okay. One question is funding. I appreciate the gap, and we’ve heard about the gap already several times in several different meetings. I’m wondering about the availability of professionals. Say there was more funding provided for more neurodiversity, would the professionals be easily found to provide those services?

G. Harrison: It’s hard for me to speculate about who would become available if there was more funding available, I guess I would say.

N. Simons (Chair): I think what Laurie is asking is if there was more money for OTs or if there were more OTs around, would they be able to be hired?

M. Stilwell (Deputy Chair): Do they exist?

N. Simons (Chair): Are there professionals…?

G. Harrison: That’s what I mean. In the Kootenays, we’re a very small community of professionals. Right now, if tomorrow you said, “We need to hire a bunch more therapists,” no, they don’t exist here. But I feel like if programs rolled out across time, there’s potential that people would fill those jobs. That’s what I feel. Does that answer your question?

R. Singh: I understand that you work with preschool kids, but when these kids transition into the school system, do you have any experience with what they feel, what kind of barriers they are facing? Do they stay in touch with you to tell you what they are facing in the school system?

G. Harrison: We don’t. Once children start school, we discharge them. Then we’re no longer part of their circle of care, so that confidentiality we talked about…. I can’t reach out to my former clients and say: “Hey, how are things going?” Sometimes I bump into families, and if they want to tell me things…. But no, once we make that kindergarten transition meeting with the school, then I’m pulling back.

N. Simons (Chair): Thank you very much. It’s been very informative, and I think that some issues were clarified from your presentation. That was very helpful.

I was just going to ask, actually…. It was going to slip my mind. When children — and Rachna has mentioned it — transition to elementary school, someone is looking at their development. Somebody knows they’ve received a referral, or at least a file or information, from Kootenay Family Place. Am I correct?

G. Harrison: Yes, that’s correct. Do you want me to explain quickly how it works?

N. Simons (Chair): Yeah, please.

G. Harrison: When a child is at Kootenay Family Place and is getting support, when they’re ready to graduate our program to start kindergarten, then we have a meeting with the school that they are going to be attending. Their learning resource teacher is usually sort of the point person from that school. Then depending on the needs of the student, we would have perhaps the OT or the physio, and we would have their homeroom teacher. Then we would have our physio and our OT or our SLP, and we would meet and just discuss. We know these children well, so we can kind of explain about what needs they have, what’s been working and those kinds of things.

An action area that we’ve been really working hard on in this community is improving those kindergarten transition meetings, because there’s a lot of information that can get lost in that shuffle between organizations. So those meetings…. We’re finding that when it works well, it really helps the students have a smoother transition into school. When it doesn’t work well, we’re really seeing problems, where students are only able to attend part days or a few days of the week and that kind of thing. So we feel like that’s a really important part of their care.

N. Simons (Chair): Well, Gent, thanks a lot. We really all appreciate it. We look forward to the report, and I hope you do too.

G. Harrison: Thank you for your time.

N. Simons (Chair): Next on our agenda we have Laranna Androsoff.

Welcome.

L. Androsoff: You have some handouts coming to you as well.

[5:05 p.m.]

N. Simons (Chair): Okay. I’ll give you a minute warning. How’s that?

L. Androsoff: Sounds good.

N. Simons (Chair): Okay. You have ten minutes. Go ahead. Right on.

LARANNA ANDROSOFF

L. Androsoff: Thank you all for having me here today to share our story. This is my daughter Trinity. Really, I’m sharing her story today. Thank you for the land acknowledgment. I really do appreciate that. I’m Russian on my father’s side and Danish and Métis on my mother’s. I’m the Aboriginal infant development and Aboriginal supported child development consultant for Boundary. That’s in the Grand Forks area.

Trinity’s differences were apparent right at birth. She was born with microcephaly, which is a smaller head circumference and, hence, a smaller brain. Then she developed global developmental delay at one year’s old. We also found out, when she was six months old, that she has something very rare called a 6q, 25.3, terminal deletion, which means she’s missing a total of 69 genes off of one of the long arms off of one of her six chromosomes. They only know what nine of the genes do. The other 60 — the science hasn’t got there yet, because the science of medical genetics is continually advancing.

Trinity also developed trichotillomania, for a short time to do a few hospitalizations when she was very young, and at 2½, she was diagnosed with autism. I was, like, “Yes. We don’t have to be poor anymore,” because after her first birthday and the global developmental delay and my background in child development, I know that early intervention works. We hired somebody part-time to work with her one-to-one, like an ABA play therapist, and then we had the funding in place to support that.

Unfortunately, Trinity’s father and I are no longer together. The diagnosis was very difficult. We both coped in different ways, and at 4½ years old, Trinity starting having seizures. She’s definitely complex in many ways, but she’s truly a gift and a blessing to my life.

Because of her special needs, I reached out. I was advocating. She was wait-listed for supported child development. I wanted to return to work part-time. She required support and daycare. I took that advocacy to Katrine Conroy, our local MLA over here, and she raised Trinity’s plight in the Legislature. In 2013, Trinity’s case was featured on Global TV on the six o’clock news. Since then, Trinity’s care team started to grow.

I’m a very visual person, so I created what you have in front of you: Trinity’s ecological model of supports. I placed Trinity at the centre.

This is her current ecological model of support. It has changed over time, depending on her age and what program she’s involved in. You’ll see her parents are in her primary supports, then her grandparents, supported child care worker — still is in her life, even though she’s eight years old.

In Boundary, we have a four-days-a-week school. That’s four days a week that our school system operates. So I need full care on Fridays, as well as after-school care, in order to work. She does go to daycare. She has a full-time EA support at school due to her complex special needs, and she also still has a behavioural interventionist due to the autism funding. Again, because of the decrease in the funding once you become school age, it’s much less.

You’ll see that in the consultative supports she has a speech and language pathologist. It was a lot more frequent for all of the therapies, please note, including physiotherapist, occupational therapist. You get a lot more service in the early years than you do in school age.

I know that our school-age OT and PT in the Boundary…. Last year their contract was 35 hours a year — a year — to service all of the children in school district 51. That spans from Christina Lake to Big White and all the communities in between. Definitely, funding is an issue. You’ll also see that she still has a child development consultant. She had a behavioural consultant for many years, but now that money is applied to a behavioural interventionist due to the decrease in funding.

Long-term supports. She’s involved in the community integration program, where they gather children with special needs and do fun activities in the community together.

[5:10 p.m.]

You’ll notice in consultative and long term, I have a primary pediatrician, a secondary pediatrician. I found with children with complex special needs, it’s very beneficial to have more than one specialist be aware of your child. Often they will take sabbaticals or long vacations and sometimes be gone for four months at a time. So having that network of support, locally and at B.C. Children’s Hospital, is extremely necessary.

Interior Health and the various programs have been helpful to Trinity. When she was first born, until we could see specialists at Children’s Hospital, we had a public health nurse come in every week to measure her head circumference to ensure that it was growing. So Children’s Hospital, of course, is in our long-term supports, as well as the B.C. Ministry for Children and Families.

She has a CYSN social worker. I’ve heard this, and I will echo it: the caseloads are way too large. She’s amazing at her job, though. But definitely, when you have a regional CYSN, you can imagine the caseload sizes of 100 or more and many communities to travel to, to provide those services.

We benefit from respite funding. It was a lot smaller. It’s been increased slightly, which has been helpful. That could still be increased, because when you have a child with complex special needs, the funding that’s provided might give you one or two nights off, if that. It’s so you can take care of your own well-being and make sure you fill your cup as a single parent of a child with special needs.

The At Home program — we qualified for that. I will share that that was one of the hardest assessments to go through as a parent. It’s a deficit-based assessment, so you have to paint the worst picture of your child in order to qualify for the program, when you’re already struggling to cope with how difficult things are.

And then autism funding, family support services — I’m also a family resource parent for the Family Support Institute of B.C. — extended family and friends, and a family doctor that will provide a referral to services right away, and we were blessed with that.

I started sharing Trinity’s story at provincial and international conferences, and in 2014, I shared at the B.C. Aboriginal Child Care Society’s conference. In my workshop there was a provincial advisor for Aboriginal supported child development, and Trinity’s workshop brought her to tears. In my workshop I also shared the video clip from Global TV with Katrine Conroy in it. I did bring it today, if we have time.

From presenting and sharing Trinity’s story and this ecological model of support that I thought could be helpful to other parents, I was asked to be the provincial parent rep on their policy working group. Then they asked if they could adapt Trinity’s ecological model of supports to create the child’s circle of support for the Aboriginal supported child development program and become the framework for their new practice guidelines manual.

You’ll see those are the pages following: the provincial policy that Trinity’s story helped to influence. I share this model with all of you because I feel like every child deserves a circle of support — not only Indigenous children, all children. I feel this model could be helpful to inform your work.

Right now I almost was faced with another advocacy battle. Trinity is eight, and the needs of the children in the West Kootenay–Boundary region continue to rise for the supported child development program. Trinity was going to be cut off of having her typical support hours in daycare due to her age. The mandate they have to focus on is children of preschool age, but Trinity’s needs are not going to disappear. We can’t just regrow a chromosome that’s missing. Science hasn’t got there yet. And her seizures…. She definitely requires one-to-one support in any environment that she’s in.

I ask that you also consider supporting the supported child development program for the school-age funding so that parents like myself can continue to work and be involved across the province. I’m also the co-chair at UBC’s human early learning partnership’s Aboriginal Steering Committee. I could not continue to do this work in the province or in our region or in my community without the support of the supported child development program.

I thank you for your time. I open it up for questions, and I also welcome…. If you want, I can boot up my computer. It’s like a two-minute clip of Katrine Conroy speaking on Trinity’s behalf.

[5:15 p.m.]

N. Simons (Chair): I have an idea. Why don’t you send the link?

L. Androsoff: I don’t have a link. They changed their website to a digital format. The print format of the story is still on line, but they had to send me a DVD in a really weird format to actually have the video clip from 2013.

N. Simons (Chair): Is it their news story, or is it the clip from Hansard?

L. Androsoff: It’s the news story, with Chris Gailus speaking.

N. Simons (Chair): Oh, Chris Gailus. Okay. Well, very good.

Let me just now look to my colleagues.

Rachna has a question, and let’s start with that.

R. Singh: Thank you so much, Laranna. You talked about the supported child development. You said that that is going to be cut off. I just want to know, because we have been hearing about this. Once the child starts school, that funding is cut off, because then it is all the education system and the autism funding. How did your daughter keep on getting this funding till now? Did you have to advocate for that too?

L. Androsoff: Because I’m a very strong advocate, and I’m a full-time working parent. The agreement that we’ve come to is that Trinity will continue to receive her support in daycare until September of 2020. Then we can relook at that. I will continue to advocate. If I need to go on TV again, I will.

If I need to involve Katrine Conroy, as our Minister for Children and Families, I will. Anytime I see her at a conference, she gives me a big hug, and the first thing out of her mouth is: “How is Trinity doing?” That just speaks to her character and the support that she provides at the level that she is at and working with all of you.

N. Simons (Chair): Well, I’ll make sure she gets that message. She sits right in front of me. I can’t quite kick her chair, but I can poke her. Thank you for that.

Laurie has a question for you.

L. Throness: Obviously, you’ve been an effective advocate, when I look at the model that you have here. I’m wondering: how far does the average child with significant needs differ from this kind of a model? Are there blank spots all over the place in the average child? I would think that you’ve probably got more than average.

L. Androsoff: Definitely. Well, and that comes with the autism diagnosis. Anything attached to that would be off of this model. It would be blank.

As well, a lot of families don’t qualify for the At Home program, when that program was so valuable. I can’t tell you how much it’s benefited Trinity and I. Her specialist’s appointments are out of town, so the At Home program reimburses a certain amount of mileage when you go to out-of-town medical appointments. They pay for her prescriptions, so her seizure medication is covered, whereas that can be a huge expense for families.

If you have to go out of town to Children’s Hospital or somewhere else, and you need to stay the night, they’ll reimburse your hotel expenses up to $150. You have access to extended OT and PT services for school-age. There are just so many benefits, and it’s so hard to qualify for that program.

N. Simons (Chair): Thank you. What was the specific program that you just…?

L. Androsoff: The At Home program.

N. Simons (Chair): Oh yeah. We talked about that. Right.

Well, Laranna, your story is really helpful to us. Not only do we know about all the advocacy that you’re doing, but you also bring a personal story. You know how it reinforces what we learn as legislators. Sometimes we get all the technical stuff and the numbers and the statistics, but you’ve given us a lot of important information that we can actually get our minds around, which is really helpful.

L. Androsoff: Wonderful. You know, just to put this offer out there, I would be more than happy and honoured to share Trinity’s full presentation with the whole Legislature, with any of you guys. So you can see the video clip, and share it with Katrine.

N. Simons (Chair): Okay. Good to know.

L. Androsoff: I just am really grateful that you are on this committee and making these road trips to reach out to rural communities. Like I said, I travelled from Grand Forks to be here today, and it was worth every second. I really thank you all for the work that you’re doing on behalf of children and youth with special needs in our province.

N. Simons (Chair): It’s a privilege to be travelling and to hear from British Columbians. Thank you.

L. Androsoff: Trinity thanks you too.

N. Simons (Chair): And Trinity, thank you.

All right. Very good, committee. We are coming up to 5:20, and Dina Zanet Costa from Kootenay Family Place is here.

I believe Katrine Conroy had something to do with Kootenay Family Place at one point, didn’t she? Well, her name is up again. There we go.

Thank you, and welcome.

[5:20 p.m.]

KOOTENAY FAMILY PLACE

D. Zanet Costa: I didn’t come here today prepared to speak, but in listening to the other presenters, I just felt that I had to talk about a few things.

I’ve been working with children and families for 32 years, 25 of those at Kootenay Family Place. Katrina was the executive director when I started there. I work closely with Gent and in collaboration with Laranna. I’m currently the program manager for the supported child development program.

I’ve supported many families going through assessments and been involved with transitioning many children to school, the school system, which is very different than the early intervention system, as far as the kind of support that you can get with therapies and such.

I have to again sort of reiterate what people are saying about…. I’m so happy for families if their child is on the autism spectrum and with the funding that they get. I’ve seen children make amazing gains by having those dollars to provide more service for the children, more intervention.

But it’s really tricky for the other families. Sometimes they go through the assessment and they’ve got significant intellectual delays. They go to school and don’t fit in any designations to get support in the school system. It’s really tough for those families.

As far as CDCs and such, Kootenay Family Place…. We consider it like a hub of services. I kind of feel like, with the CDC…. There are some amazing CDCs across the province. We don’t have any in this area currently. There was one in Trail, which closed down many years ago.

Part of the reason was that before, supported child development was block funding, so a block amount of money would go to one location to support children with extra needs. It changed many years ago. The reason was they felt that families should have more options, so then the dollars started to follow the children, where the families wanted them to go. If a family in the area wasn’t able to attend Hobbit Hill and wanted to take their child to this smaller family centre or whatever, they had that option.

I see good and bad with both of the models, but the model that is currently happening is the one I’ve been working in for the last 13 years. That’s the one I’m familiar with more.

N. Simons (Chair): Can I just ask: do you call that the individualized funding model? That’s what you refer to it as?

D. Zanet Costa: Yep. That’s right. In that, we support children in child care settings. Sometimes it’s a child with significant delays that may need more support, so more of one person working with them. But then we also have settings that have children with moderate delays, and there might be two or three of them there. We have settings like that that receive dollars to have shared support. So one person comes in, and they work with more than one child.

What Laranna was talking about, about the school-aged children…. Supported child development, on paper, supports children up to the age of 19. But that, I know, in this region anyway, hasn’t been happening for many years because there’s just not enough money.

In being on regional calls with other programs in the area, nobody has been supporting the children from 12 to 19, and then very few of us are even able to support the children from six to 12. Some areas don’t even…. In fact, West Kootenay–Boundary is one of the last areas that is able to do that. There’s just not enough money to go across for all the children.

Because the kind of mandate age is that preschool early intervention, we have to focus on that. What’s left for working families can go there. We do our best.

N. Simons (Chair): Just to give the committee a general overview of Kootenay Family Place, you do provide other programs that are not specifically in the special needs cate­gory?

[5:25 p.m.]

D. Zanet Costa: That’s right.

N. Simons (Chair): Could you give us a broad outline?

D. Zanet Costa: Yeah. Kootenay Family Place has the supported child development program. They have the infant development program. They have therapies: speech and language — that’s Gent; occupational therapy; physiotherapy. We also have a neighbourhood house model for family drop-ins. We also operate a child care centre out at Selkirk. That’s Kootenay Family Place.

Some of our programs are ministry-funded, like supported child development and IDP and the therapies, but not all of them.

N. Simons (Chair): CYSN is the special needs social workers. Do they work closely with your organization?

D. Zanet Costa: They do. Thank you for bringing that up. I meant to say that. In this area, we’ve got two CYSN social workers, who are amazing. But like Laranna said, they have hundreds of kids on their caseload. It’s crazy.

If we support a family through an assessment process, then their next step, if they were on the autism spectrum, would be to meet with that social worker, who would then introduce and help them set up what the funding would be for them. It’s a big job, and they do really well.

It’s complicated for parents. It’s overwhelming. I have been to many of those meetings just to try to help collect the information for the family, because it’s a lot. So we do. I actually sit on the local At Home program committee, as well, with our CYSN social workers in the area. So we are connected, definitely.

N. Simons (Chair): Do any of my colleagues have questions at this point?

L. Throness: You spoke of the lack of programs in school. It’s my understanding that a child with neurological disorders would get up to $18,000 per child. What is done with that money?

D. Zanet Costa: When we talk about one-to-one support, that’s a really loose catchphrase in a lot of ways. Children that I’ve transitioned to school, some of them…. The designations for support are very small in the school district. The autism spectrum is one of them, deaf and hard of hearing. Blindness is another one that you could pretty much be guaranteed that you’re going to get some dollars with.

Even having said that…. So that $18,000 comes into the school system, but they’ve got, like, four or five children who aren’t diagnosed in the same classroom. That’s really being shared with all the kids, which is very difficult. It’s very taxing for the school system. They do well with what they have, but it’s very difficult.

Then as far as therapies go, one of the occupational therapies for school district 20…. There’s one in the whole area. She’s got over 200 children on her caseload. There’s no therapy happening, really. It’s just going in, assessing, “Here are some ideas; bye, got to go on,” right?

The early intervention therapies that the families can access before they hit the school system are really important. Once they get there, it really…. It’s just a lack of funding from the Ministry of Education as well.

R. Glumac: Thank you for coming up and sharing your experiences in this area — 32 years working in this. It’s a lot of experience. I’m learning a lot through this whole thing. I’ve had little experience with any of this prior to being on this committee, and this whole trip has been very enlightening in many ways.

I keep hearing the same things over and over. I keep hearing about how families are struggling to find help. If they happen to get the autism assessment, then they have lots of options and they can find somebody to do that.

We’re going to be tasked with making recommendations to government on this. I keep coming back to the CDCs. I know that before, that was the one-stop shop. Everything was there. Now private individual funding comes in, and people have options now.

[5:30 p.m.]

Could there be some model where all those other private services still have to somehow work with the CDC so that the CDC still becomes the central hub, so that parents at least know where to go? All of the information sort of starts there.

If you look at an analogy to the health care system, we have our family physicians. That’s our first point. We don’t go straight to a specialist. We go to our family physician first. We’re working now towards urgent care centres and teams of people working together. I see a lot of analogies to services for children with special needs.

What do you think about some kind of a model like that? I think what I’m hearing is that it’s working for some people, and it’s not working for others. What recommendation would you give? I’m curious to hear your thoughts on the whole CDC being a hub.

D. Zanet Costa: In this area, we have small communities — Castlegar, Trail, Nelson, Boundary. A lot of those places have sort of set that up in more of an informal fashion, like child care societies, like Kootenay Family Place, like Kootenay Kids in Nelson.

I would think it would be devastating if the government decided to all of a sudden make this new model and all this stuff that’s already been happening for years…. Kootenay Family Place is 40 years. Just to kind of, you know, whatever that might be…. I think that would be devastating in communities that are used to what’s there. I do feel like the services, like in West Kootenay-Boundary where I have been working for 25 years, are very collaborative with each other already. I don’t want you to think that there aren’t those connections with the ministry and other agencies and some private therapists, and then we’ve got our early intervention therapists. So there is a lot of connection and collaboration happening already.

But yeah, it is difficult for some families to find the services. Even though we try really hard to make sure that we’re out there and presenting to families and going to events and, “Hey, this is what is around for you, available for you,” it can be tricky still, sometimes. There’s no doubt.

R. Glumac: So no recommendation?

D. Zanet Costa: My recommendation is that I would hate to see the wheel reinvented. Some of the places that are already doing a lot of that work…. I mean, yeah, let’s add on to those places, maybe, and grow them to maybe be able to encompass more. But I would hate to…. Somebody who’s not doing the work and understanding it at that ground level…. To just all of a sudden say, “Hey, let’s open a bunch of CDCs,” those other places just kind of get lost.

N. Simons (Chair): I think it’s fair to say that we recognize the complexity of this sector. Our goal isn’t going to be to try to simplify it but to try to make it more manageable in its complexity. Because we’re not going to make it simple. I appreciate the fact that we’re exploring what some of the thoughts are that have come up for people who have worked in the sector for a long time.

I’m suggesting that maybe once we conclude, we can watch that video, if that’s okay.

With that, our committee is on our way to Vancouver Island. We really appreciate you taking the time to speak. Thank you very much on behalf of all the members. Thank you, those in the gallery, for being here, and for those who presented. Thanks to all of Hansard and to the Clerk’s office.

With that, I adjourn this meeting.

The committee adjourned at 5:34 p.m.