The committee met at 9:40 a.m.

[N. Simons in the chair.]

N. Simons (Chair): 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. With me is Michelle Stilwell, who’s the Deputy Chair of this committee. We’re happy to be here in Kelowna and thankful to be holding our meeting on the traditional territory of the Syilx people of the Okanagan Nation.

On behalf of the committee, I would like to thank everyone who’s able to make the time to meet with us today. We recognize that families of children with special needs often face additional pressures and challenges, and we appreciate their willingness to share experiences with us. We’d also like to take a moment to acknowledge and thank those who provide services and support children and their families.

Our committee is made up of MLAs from all parties of the Legislative Assembly. Part of our role is to raise awareness and understanding of B.C.’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 the Ministry of Education to learn more about how supports and services are currently structured. We are now holding public hearings throughout B.C. to listen to parents, caregivers, service providers and other organizations about how assessment and eligibility processes and services can be improved.

We’re accepting written comments and submissions until five o’clock on Friday, June 7. You can find out more about our committee on the Legislative Assembly website. Just look for the parliamentary committee tab. We will carefully consider all the input we receive and will use it to make recommendations to the Legislative Assembly in a report, which will be released in the early fall.

We have a number of registered speakers today. Each will have ten minutes to speak, followed by five minutes for questions from the committee. I think it’s just fair if I give a person a one-minute warning.

K. O’Neill: I was going to say, please give me a warning.

N. Simons (Chair): Yeah, I’ll give a warning. We won’t interrupt. I’ll just hold up a little piece of paper.

By the way, today’s meeting is being recorded and transcribed. All audio from our meetings is broadcast live via our website, and a complete transcript will be posted.

I’d like to just make special welcome of Ben Stewart, MLA. Thanks for being here, Ben. Nice to see you. You’re a little further away than we usually sit in the Legislature, but I can still see you. I can make you out.

Now I’ll ask members of the committee to introduce themselves, starting with Teresa.

T. Wat: Thank you. I’m Teresa Wat, MLA for Richmond North Centre. Welcome.

L. Throness: We’ve already met. Laurie Throness from Chilliwack-Kent.

M. Stilwell (Deputy Chair): Michelle Stilwell from Parksville-Qualicum, Deputy Chair.

R. Leonard: I’m Ronna-Rae Leonard from Courtenay-Comox on Vancouver Island.

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

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

N. Simons (Chair): Joining us today are Stephanie Raymond from the Clerk’s office and Jennifer Arril from the Clerk’s office as well. What’s your official title?

J. Arril (Committee Clerk): Committee Clerk.

N. Simons (Chair): Committee Clerk. See, there you go. I should know by now. We’ve been travelling together for a while.

Simon DeLaat and Amanda Heffelfinger are recording us for Hansard. It’s being beamed back to Victoria, where other Hansard people are making sure they write down what we say so we can look over it later.

I guess, without further ado, we’re starting with Kim O’Neill.

Welcome. Thanks for being here.

Presentations on Children and Youth
with Neurodiverse Special Needs

KIM O’NEILL

K. O’Neill: Thank you. My name is Kim O’Neill. I have a BSW with a specialization in Indigenous children and families. That’s sort of new. I used to work as a teacher’s aide.

I came to talk about a very recent experience for me. I started doing my practicum at FASD Okanagan Valley Assessment and Support Society. I thought I knew what FASD was because I have family members…. My niece and nephew have it. I just had a very basic — well, what I know now is basic — understanding. Through my work there, I learned a lot more. I started having thoughts go off in my head like: “Hmm, this sounds like my child. Hmm.”

I was 19 when I had him. Back then, I didn’t…. I was four months along by the time I found out. I turned 19, and in B.C., that’s the drinking age. I remembered speaking to my doctor about it back then — this was 23 years ago — and saying to him: “Is this a possibility? Is this a thing? Should I be worried?” “Well, we’ll know when he’s born.” Okay. He was born. They said he was fine. I never worried about it again.

[9:45 a.m.]

Over his lifetime, he was diagnosed with ADHD and some anxiety. I thought: there’s something, you know. He’s married now. He has a good job. But there are definitely things he struggles with.

The more I learned, the more I was like: “Uh-oh. Maybe there’s something not right.” I spoke to him. You’ll have to forgive me if I have a tear, because he’s such a beautiful man. He said to me: “Mom, it’s okay. I don’t want you to worry about that.” And I said: “Well, I need you to get your butt to the doctor, because maybe this can help with the pain that you struggle with.” Because something I had learned was that joint pain is something very common.

He’s had it his whole life and just been told that it was growing pains. Then as a young man, they just kind of shrug him off, because: “You’re too young to have pain.” I’ve actually said that, as a mother: “You’re too young to have that much pain. Seriously. Wait till you’re old.”

So I sent him to the doctor. He came and actually woke me up one morning, and he said: “Mom, you don’t even have to worry. The doctor says it’s not possible because you only drank in the first trimester.” I woke up really fast, and I’m like: “What?” And he’s like: “There’s no guilt, Mom. You don’t have to feel guilty. I can’t possibly have it.” What? He says: “Oh yeah. And the doctor said there’s nothing we can do as an adult anyway.”

The first thing I did when I got to the office that morning was make a doctor’s appointment. I didn’t even get to the office; I just made the doctor’s appointment. I said: “I need to come in and see you.” I got to the office, got my little information pack together, and went to the doctor. I just couldn’t…. I’m like: “She’s a professional. How does she not know? How does she not know what seems should be very basic information — that, yes, you can get it in the first trimester and, yes, there is help?”

With as much tact as I could possibly manage, I spoke to her, and I said: “You know, my son came to see you, and you told him that he couldn’t get FASD if I only drank in the first trimester.” She said yes. I said: “That’s not a thing. He most definitely could still have it. There is so much new information.” And she said: “Well, I don’t have that information.” I said, “You do now,” and I gave her all the information I had.

Then I asked her: “Why did you tell him not to go get tested? Why was that?” And she said: “Because it’s very expensive, and with no adult support in place, why would he get tested? He would spend all this money, and it would lead to nothing.” I said: “Oh, well that’s not a thing either. I actually work for a place that does adult support. Things like his pain, things like all of these other issues… I think it’s important that he knows. And by the way, there’s something called Jordan’s principle that, up until they’re 26, will help fund that.” She said: “I didn’t know that either.”

I felt grateful that I was able to share that with her, but horribly shocked that someone with a Ph.D., who’s a doctor…. So I gave her my card and my information. I said: “Just send them my way. I will help them out.”

Then like two days later I got a call from sister, because we’re working with her family and her teenage children who are struggling with FAS. The police had been called because there had been a thing at her house. She kept trying to tell the officer: “Please, my child has FAS. You need to deal with him differently.” And he said to her, “That just means you’re a drunk idiot, and I don’t have to deal with you,” destroying my sister. He was treated with absolute disrespect.

I just think that if the information had been there, there would have been a better way to…. If the officer had understood what it meant for her son to have FAS, then he could have dealt with it in a better manner.

I think, for me, what I’m hoping you can take away from it is that there is not information, or the information is there, but it’s not getting to the people that need it the most. They are not…. I don’t want to call anyone out or say that they’re doing their job badly, but if you don’t have the information, how can you, at all, help the people who need it?

[9:50 a.m.]

I know that our society is one of, like, two that diagnoses adults, and there’s no funding for us. We reach out and reach out, but…. I’m not sure if it’s that they just don’t understand how important we are and the needs in even just our little community, or if it’s…. Just knowledge, I guess, is my takeaway.

N. Simons (Chair): Kim, where do you think people would be able to access that information earlier? Who do you think might be able to raise awareness in that regard?

K. O’Neill: Well, definitely doctors. They need to have more up-to-date information and understand that it is a whole-body issue, not just…. The doctor, when I was speaking to her, was like: “Well, he didn’t have any facial….” So there was just an understanding that if they don’t have any of the facial features, there must not be a problem.

Or lots of bad behaviour issues. My son didn’t have bad behaviour. He was a dreamer. He was easily distracted. He was all these other things. But because he behaved well, he had a crazy mama who was like: “Oh no. You behave.” He didn’t have, maybe, those behaviours that they thought he should have had. So he had all these other diagnoses that meant he had to go through life not knowing that: “Oh no. My pain isn’t all in my head. These things that I struggle with….”

Now he has a wife that he can tell: “Hey, honey, I’m not actually ignoring you. You need to do these things this way or talk to me this way, use pictures and describe things — how you want them to be. That’s how I can best help you.” His wife said: “Do you have a support group for me?” And I said: “Well, we’re working on that. It’s a financial thing.”

L. Throness: Thanks for your testimony. Obviously, your son is very high-functioning. Does FASD exist on a spectrum where there are some people that you would hardly know that they have it and some people with whom it is obvious?

K. O’Neill: I want to say yes. There is definitely a spectrum. There is definitely…. It will affect them in different ways. Some will have more physical and body issues.

I honestly don’t think you can say, just by looking at them, that that person has FASD. There are some, but it’s such a small amount that will have the facial features. If you don’t know anything about that…. It seems to me there are very few that do, if you don’t have any kind of training or any professional. It’s why it takes so long to get an assessment, because it’s a long process. They have tests and more tests, and I don’t know enough yet about that process. I just know that as we’re going through it….

I mean, he works full-time. So how does he take a full day off to go to the doctor, our special doctor, and then a whole other day off to see this other specialist and a whole another day off…? Yet it is most important. But it runs like $4,000. I don’t know a lot of young people who have that kind of pocket money.

T. Wat: Thank you, Kim, for sharing with us the information. I’m just trying to understand…. You seem to have a lot of experience. You have personal experience, and you have professional experience as well. What is the first step of assessment? Is it going to your family doctor, or is it coming from a parent and then they refer you to a specialist? From what you told us, the doctor did not want to send your son because it’s expensive. Is that doctor a specialist? I’m just trying to understand more.

K. O’Neill: No. The doctor he saw was just a GP, just a general practitioner. Normally, that is…. I don’t even think people know where to go to get that assessment. We get calls from people that say: “Well, we heard it from Independent Living” or “Disability said we should call you.” People don’t know. They don’t even know how to get that assessment or get that help.

There is more for young children, but even then, it is very, very lacking. We usually have them come in, and we do a first sit-down assessment. What makes it really tough is one of the things in order to get that diagnosis…. That diagnosis is what is going to get you the help, but the hardest part about the diagnosis is needing a parent to say: “Yes, I drank.” There’s so much shame attached to that.

[9:55 a.m.]

My own son was like: “Mom, don’t tell anyone.” He didn’t want me to tell, because he was so afraid that somehow I would be looked at poorly, that my education, the stuff I’d worked really hard for, would no longer matter because I unknowingly drank while I was pregnant.

Even a lot of the handouts you get — pregnant moms — don’t even say: “Just don’t drink.” They say: “Well, we don’t really know, so maybe that’s not a good idea.” No, just don’t do it. They don’t talk about if you know you’re planning to be pregnant, don’t even drink in that time, because even that small window can have that effect. Prenatal care needs to be….

N. Simons (Chair): Thank you for bringing that up.

Michelle has a comment.

M. Stilwell (Deputy Chair): Thank you, Kim, for coming and sharing your story with me today. I just wanted to comment on the stuff you said about the police and not having education for the police on how to deal with those who have FASD. I would stretch that to autism and any neurodiversity.

K. O’Neill: Absolutely, yes.

M. Stilwell (Deputy Chair): I just want to say that in Vancouver, through the Pacific autism centre, Wendy Lisogar-Cocchia has been a huge advocate for that, working with the police departments to educate and train the people on the ground so that they are more aware. I don’t know what’s happening in Kelowna — if there is anything that you can do to even advocate for that so that maybe Wendy can bring the trainers out to help support the community here. You can probably work with Ben Stewart, your local MLA, to help make those connections.

K. O’Neill: Well, we are having a conference, a big one. It’s our second annual one, in October. It’s where we have speakers come in. We do a lot of information-sharing to get it out there. If anyone that’s listening would like to talk to me, I can get an email and send them our poster and our information about it. I believe last year there was somebody from the Saskatchewan police department there.

We really want to make that so all professionals are sharing in the information. They all have an idea. But it’s hard when little communities…. It’s little communities that are getting really affected by it, the little ones who don’t have the information. They don’t have, or they feel like they don’t have, the ability to get the information. There’s no one there telling them.

N. Simons (Chair): On behalf of committee members, I’d like to thank you for taking the time, for giving us your perspective on things. It all really helps us in our deliberations. Thank you, Kim.

K. O’Neill: Thank you for having me.

N. Simons (Chair): Thank you, committee members and guests.

Next on our list is the B.C. Association for Child Development and Intervention — Jason Gordon.

Welcome to the witness table. No, we call it a witness table. You’re not a witness. You’re a guest sharing your insights to the committee, and we appreciate it.

B.C. ASSOCIATION FOR
CHILD DEVELOPMENT AND INTERVENTION

J. Gordon: Good morning, everyone. Thanks for this opportunity. I think I’d like to start just by acknowledging we’re on unceded territory of the Okanagan Syilx Nation and also talk a little bit about BCACDI.

The B.C. Association for Child Development and Intervention is a group of 31 member agencies across the province, typically referred to as child development centres. These are agencies that contract with the Ministry of Children and Family Development to deliver a range of programs and services to children and youth with special needs and their families.

Some of the programs you may be familiar with or hearing about over the past — I guess this is your first week of deliberations — are the infant development program, which provides support for families from birth to age three that have a child who has a special need or requires extra support; the supported child development program, which helps kids with additional support needs access child care settings.

Then one I’d like to focus a bit on today is the early intervention therapy program, which provides occupational therapy, which is more activities — the daily living; physiotherapy, which some of us are more familiar with, which really helps a child explore their environment through their gross motor skills; and then speech and language pathology, which focuses on the communication.

Those are the main programs our member agencies provide. I would like to dig a little bit deeper into early intervention therapies from an assessment and eligibility perspective.

[10:00 a.m.]

First of all, with eligibility, one of the nice strengths of these programs that the ministry provides is there are really very low barriers to entry to access early intervention therapies programs from an eligibility perspective. It’s really just if the parent or caregiver identifies a developmental delay, they can go ahead and self-refer, or they may get a referral from a physician or a public health nurse, teacher, etc. There are a lot of ways folks can access the program, which is really a strength of that program.

However, through the lack of strict eligibility, it really creates a lot of challenges around access. I just want to talk a bit today about some of those barriers that we’re seeing in the communities across the province.

Some of this, I think, is historical. From 2008 to 2016, there was no significant base contract funding increase for the early intervention therapies program, despite, as you can imagine, increasing demand and even increasing operating costs for agencies. That created a lot of wait-lists and wait-time issues to access these programs.

We are privileged. Our organization has about 80 percent of our member agencies using the same client management software, so we’ve started to do some data work over the past six years trying to standardize our definitions around certain data elements and starting to measure wait time and access. We piloted this program last year.

To give you an example, in the North region, the average wait time to access speech services is 335 days. In the Vancouver Coastal Region, the average wait for occupational therapy access is 180 days, and in the Fraser Region, the average wait time to access physiotherapy is 151 days.

Just to provide a bit of perspective, imagine if you had a three-year-old child and you needed assistance with communication for your child. So 335 days is basically a third of their life, which you’re going to have to spend waiting on the wait-list to access those services.

The other scenario we see quite a bit is a four-year-old…. As they start to get ready for school, some issues might be identified and some developmental delays are identified, and the family is referred for an intervention, which, again, is only available to that child up until school age. If they get referred too late, when they’re around four….

There are kids in this province right now who are waiting for early intervention services who never get the opportunity to have them because they “age out” and enter the school system. In the school system, the services are really consultative in nature, whereas that early intervention program is more specifically set up for a bit more intensive services intervention.

A couple of recommendations we’d like to see from our association are — certainly realizing there’s a limited envelope of funding — some significant increase in investments for the early intervention therapy program in particular, and also consider having some wait-time benchmarks, such as that we see in health care right now around surgical wait times, etc., just so that we can have a bit better idea of what we can expect for our families and provinces. It would also help with funding distribution if we know — for example, if we expect to see a three-month-or-less wait time to access early intervention therapy services.

Also, in terms of the base contract funding, right now these agencies typically get annual funding per contract. If it stays “frozen,” if there’s no increase, there’s again no way to…. Any rising agency operating costs just erode away the ability to provide service. Some type of annualized index increases to contracts in this sector would be beneficial just to help with some of those inflationary increased operating costs of an agency that don’t get translated down into actually having to cut back on services or impact service delivery.

I’d like to switch gears a little bit away from the traditional early intervention therapy programs and talk a bit about autism. That is something that many of our agencies are involved in, in providing services to, and it does have some impacts on our early intervention therapy programs as well.

As you’re all likely hearing, there are some really significant wait times for assessment services right now for autism. Why that’s so challenging is that for families to access the individualized funding, they need to, obviously, have that diagnosis. So these families, while they’re waiting for that diagnosis, are in those early intervention therapy programs and contributing to the wait-time issues and the intensity of service issues many agencies may have.

[10:05 a.m.]

Once that diagnosis is made, we typically see these families exit the foundational programs, because they do have…. You can use the individualized funding to purchase services, and typically, that means they can access services with less of a wait time, and they can have more intense services delivery for their child.

We would like to see some investments in assessment services for autism. It would actually help to take a bit of the pressure off their intervention therapy programs that we’re currently seeing.

Many of our agencies have started out-patient-type programs that families can access using the individualized funding. It’s been a really interesting process, over the past ten years or so, of seeing these traditional non-profit agencies that aren’t used to operating with these contracts and have to deal with the increased administrative burden of developing essentially what are out-patient-type therapy programs. And, just again, these are some of the challenges that are created by the individualized funding model.

If there is a pool of 30 families in the community that are all going to access the out-patient therapy program for an agency, then essentially it’s 30 different contracts that that agency is working with for those families.

Another one of our recommendations in the areas of autism would be to develop a complementary model to our existing individualized funding model which allows for bundling of contracts so that an agency is just dealing with one contract to deal with the families in that area that want to use their service, as opposed to having these 30 different individualized contracts to deal with. We think that would really decrease some of the administrative burden and, again, allow for the agency to provide that service.

In some of the larger communities, we’re seeing some more sophisticated businesses being able to provide this type of service. But again, in a lot of our more rural and remote areas, the contracted agencies are really the only option for a lot of families. So giving them an avenue to be able to actually provide services using this individualized funding model would just, again, make sure those opportunities are there for their families.

The last little thing I want to touch on before we get into some questions is that one of the challenges we see across the province is there’s really no history behind how these programs were developed and how resources were allocated, historically, across the province.

What we’re seeing now, with a bit of a shift in the type of family needs that are being identified in our communities, is a lot of mental health and behavioural issues associated with a lot of these neurodiverse challenges that we see. What we typically saw ten years ago is maybe a child with cerebral palsy. Now we see a child with cerebral palsy that has some behavioural issues and has autism. So we’re seeing a bit of a shift in the types of needs that families have out there in our communities.

We also see this complex service, which I’m sure…. Many parents have made us aware. Services aren’t easy to find. It’s hard to identify what’s available in their community and where they need to go. Almost like a family navigation type of need that’s started to arise in many of our communities.

Some of our larger agencies that have a lot of fundraising capacity…. They’ve actually responded to this need by funding, through their charitable organization, a family navigator, a family support worker and behavioural consultant services, because they really see these needs in their communities, and they have the capacity, using their fundraised dollars, to actually create these positions.

Unfortunately, what happens in our communities where they don’t have the same kind of capacity to fundraise is they don’t have these types of positions. So we have a bit of an inequity of services around our province right now. Some agencies will have this nice basket of services where we can really wrap services around a family, whereas other agencies only have what they’re funded through government services, which are just, strictly, infant development, supported child development and intervention therapies and don’t have the same capacity.

Our final recommendation is, really, let’s sit down with the sector and with government to identify what that basket of services is that we want to make sure all families across the province have access to, regardless of the community where they live, and let’s make sure those are available — a standard of care that we can implement across the province.

N. Simons (Chair): Well, thank you very much, Jason. I really appreciate your insight and your comments.

I know Laurie has a question.

L. Throness: Just a few very quick questions. How much do CDCs, in total, receive from MCFD every year — your 36 agencies?

J. Gordon: That’s a great question, Laurie. Not all child development centres are members of BCACDI. We’re a member-based association. We have 31 of those agencies. I think there are likely more, around 42, that could potentially be eligible. I really only have the information in contracted dollars for our associations.

[10:10 a.m.]

L. Throness: Ballpark, though.

J. Gordon: Oh gosh. I really would have to…. I’m not prepared to answer that question. My apologies, Laurie. I don’t have those numbers offhand.

N. Simons (Chair): We’ll get that question in to the ministry. They can answer it for us.

L. Throness: The bundling of contracts — what hinders families from doing that now? I mean, they have the 4,000 or 6,000 each. Couldn’t 30 of them get together and ask the CDC to provide services to them?

J. Gordon: I think that’s probably a good possibility, Laurie — that they could do that, if the families have the capacity to get together and do so. Again, the agencies and executive directors of service in an area could probably facilitate that process a bit better. It’s just, really, the administrative burden behind doing so. That is, essentially, what we’d like to see. If there’s a cohort of families in a community, and they’re happy with that services-providing agency, that’s arranged — where we can just have one contract instead of having those various individualized ones.

N. Simons (Chair): Instead of the individualized funding contracts all doing the same….

J. Gordon: Exactly.

N. Simons (Chair): Can you give the committee some examples of some of what you called the outpatient-type therapy programs?

J. Gordon: Sure. Penticton, here in the Okanagan and, actually, Vernon and Starbright…. Vernon, Kelowna and Penticton agencies all have these outpatient-type programs where they have behavioural consultants, behaviour interventionists, occupational therapy and speech — a focus on providing services for children with autism spectrum disorder.

Again, what has to happen is that the families would sign up to participate in the program, and it’s a pretty regimented frequency of service — obviously, family-centred and goals set according to the family but, again, agencies having to contract with each family individually.

If you’re thinking about operating a business in the IF world, you deliver the service, and then you invoice, and you collect the funding 30 days later. There’s no consistency, in terms of we don’t know if there are going to be 17 families participating in our program this year or only 11, maybe, because they all go into school age and their services are cut. From an agency perspective in terms of hiring staff and planning from a business perspective, it just creates a lot of challenges.

R. Glumac: We spoke to somebody yesterday who suggested that, because there is such a long wait for the assessment for autism, really it should be a needs-based…. Those that need the services should be able to access the services. The suggestion was that there should be no eligibility criteria in the early years for access to those services.

I’m just wondering what your thoughts are about something like that.

N. Simons (Chair): I’ll just clarify, if I can and if you don’t mind, that’s it’s the diagnosis-based funding model. Without the diagnosis, you don’t get the funding. The suggestion yesterday, I think, was universal programs for those who are identified, thus avoiding the wait.

J. Gordon: We have this struggle all the time around needs-based versus population-based funding. It is something that we, as a sector, feel would more appropriately meet the goals of families.

Sometimes, in the world of autism, as an example, with the amount of money that you receive as a family, if you have a high-functioning child, you might not utilize all that funding. Where there are a lot of kids that, really, are more lower-functioning and need extra support, those families use up all that funding and could use more but don’t get access to it. Some type of a needs-based model would help to shift some of those resources around so that the families with the greatest need have more access to them. That would be my comment on that.

R. Singh: Just a clarification. Most of these child development centres.... Are they providing services just from zero to six, or also when the child goes into the school year?

J. Gordon: There’s a really broad variety. What’s really happened, over the past 15 years or so, is that we do see that services are really scattered. A lot of child development centres will have those core programs that I spoke of but will also provide school-age therapy programs and will also provide the fetal alcohol spectrum disorder key worker program, whereas in other communities, the child development centre might only have one or two contracts.

There are some really good examples, I think, of where we have a really broad range and basket of services in a centre that are really exemplary and that we would like to see across the province. In other communities with procurement and contracting challenges that, I’m assuming, have happened over the years, they don’t have that same type of breadth and scope of programs.

[10:15 a.m.]

R. Leonard: Thank you for your presentation. It’s a good wrap-up.

I guess my question that’s sort of been nagging at me now for a couple of days is that there is so much need. I’ll take speech language therapies, where it’s identified that they really would benefit from three days a week but they’re getting two days a month of service.

How effective is that service? Are we using our dollars appropriately to create some kind of success in the end? Are you measuring on those kinds of metrics?

J. Gordon: There’s growing evidence, actually, around…. The type of high-intensity service for a shorter duration of time is more effective than the sort of slow drip we have happening now. I think what’s happened over the years, with the lack of resources, is that agencies have tried to meet the needs of everybody the best they can by going to this more consultative model and really watering down the intensity of services, which — the research is starting to demonstrate — isn’t the answer.

We’re trying to shift our members back to this two or three blocks of high-intensity service, then allow a family to work on those skills for half a year, then come back for another intensive block because that does seem to be where the research is leading. But it’s going to take a bit of a paradigm shift and, really, using the research to try to shift practice back that way.

R. Leonard: Thank you very much.

N. Simons (Chair): Thank you very much for your presentation to us. We are moving along.

The Deputy Chair has some sort of pull in this thing, so she gets to ask.

M. Stilwell (Deputy Chair): I just have one question. When we’re talking about…. In relation to the speech language therapy and doing intensive therapy, how many of the organizations that you work with are doing more group therapy? I mean, if we’re talking about large numbers of kids who need speech language, and it’s about play and it’s about using different modes to get them to do their blends and their sounds and things like that, are there many that are doing those kinds of activities to kind of bring them in and embrace those children who need the support rather than one-on-one intensive therapy?

J. Gordon: Yes, for sure. We’re seeing more models springing up. The use of therapist’s assistants is another example. So innovation is happening in practice, recognizing that the use of a therapist’s assistant or use of a group isn’t the best approach for every child. But certainly, there are children where that approach will occur.

One of the benefits of our association is we have a chance to share those promising models of practice amongst the membership. Certainly, we’re seeing more and more of that in response to…. You know, there’s always that…. Once resources are really scarce, we sort of are forced to be innovative and do some neat things. So I would say that our sector has done that for quite some time. Yeah, for sure.

N. Simons (Chair): Thank you very much for your time and for your contribution.

J. Gordon: Thanks so much for your time. Don’t hesitate to reach to BCACDI should you have any questions.

N. Simons (Chair): Thank you for what you do.

At this point, I’d like to just acknowledge that Steve Thomson, Kelowna-Mission, is in the house.

Thanks for joining us. You, too, are about as far away from me as we sit in the Legislature. You’re helping with the homesickness.

Next on our list is, from the FASD Okanagan Valley Assessment and Support Society, Bernadette O’Donnell.

Welcome and thank you for being here. Welcome to the table and thanks for coming. You have ten minutes, and I’ll give you a one-minute warning, if you don’t mind, in the form of that.

B. O’Donnell: You might have to give me more.

N. Simons (Chair): I could do two minutes, if you want.

FASD OKANAGAN VALLEY
ASSESSMENT AND SUPPORT SOCIETY

B. O’Donnell: Before I speak, I wanted to just make a note that we are meeting on unceded territory of the First Nations. I wanted to acknowledge that.

Mr. Simons, I’m speaking before you with a passion in place, as well as an educated and experienced background. I was a resource educator and a school administrator for 35 years. During that time, I advocated for families and youth who were diagnosed with FASD and other disabling conditions.

I was the president of the support network in Alberta for 12 years. After retiring from teaching, I worked with the Calgary John Howard Society, coordinating their extended FASD support program. I worked with over 150 inmates over the years that I spent there.

[10:20 a.m.]

Those are my extended community experiences, but I also want you to know that I’m a mother of five. Two of those children are adopted and have FASD, so I’m viewing this issue through a multifaceted lens.

When I retired, I came to B.C. I was absolutely shocked when I looked to see what was available that I could get involved in, in this community around FASD. I could not find an association. I could not find a society. I could not find a website. As that grieved me dearly for all the people who are barriered and not able to access supports, I kept saying to myself, “Well, somebody has to do this,” and I guess I became “somebody.”

I made it my mission to open up an assessment clinic for adults in the interior of B.C., and I am the ED of this organization that you see on my card. Our mandate is to complete assessments for adults and youth over 15, offer support groups for adults diagnosed, as well as the support groups for their caregivers in the community. We also offer prevention awareness initiatives to educate the people in the Okanagan Valley.

I don’t have a whole lot of experience around how children are identified or how to experience youth in the schools, other than secondhand stories. The challenge has been with identifying the circumstances around a mother’s admission of using alcohol during her pregnancy. There is so much stigma and shame that it’s easier for a birth mother to speak to her hard drug addiction, which leaves a newborn child being addicted to the same narcotics, than it is for her to say that she used alcohol during her pregnancy. So public talking, getting that shame and blame sorted out, is a real barrier for many of our youth, especially if they’ve been adopted or if they’ve been in foster care.

There are three issues that I find really frustrating around this issue — firstly, the wait-list to be diagnosed. Youth do not have the gift of time. When I say “youth,” I’m talking people 15 years and older. Youth do not have the gift of time. Waiting on a wait-list means losing yet another school year of supports, building more layers of negative self-esteem and more interest in self-abuse, drugs and suicide. Our clients are walk-in, and they have come to us to avoid long wait-lists, because we are able to do diagnoses within a very short period of time.

My second frustration is the inconsistency around the assessment process and the assessment reporting out. I have seen reports from other assessment clinics that are 2½ pages long. I have seen reports from physicians that are two sentences. We know that FASD impacts the entire body. There should be added an entire diagnosis of the entire body systems that are being impacted by the FASD.

There are a very few limited recommendations that address the medical needs, psychosocial needs, educational, vocational and justice. Having FASD is a lifetime. The recommendations need to address that part of a child’s or an adult’s life. Getting a diagnosis means that there is going to be a change in practice. I’m not seeing assessment reports that offer this type of information and this type of support over a long period of time.

The third challenge that I have is that we are a non-profit assessment clinic, and the cost to complete a diagnosis is far beyond what a family or an individual is able to pay.

Jordan’s principle has been a pleasure to work with for those who have Indigenous status. Having access to Interior Health dollars or cross-ministry funding to subsidize the diagnostic team’s costs would make it possible to have more youth and more adults identified, and adverse outcomes can then be intervened. Referrals come to us from parents, spouses, people who are self-referred, agencies, courts, lawyers, addiction centres, psychiatrists. In most cases, these are adopted parents or caregivers who are acting as parents because of unforeseen cases — grandparents, for example, sisters, brothers.

There are significant barriers and gaps with respect to assessments. After our clients are diagnosed, we stay with them and become part of their support team to ensure that there are wraparound services for them over an extended period of time. Case conferences are coordinated so that there is ongoing support that meets the needs of everyone. Sometimes one-on-one meetings occur to help and add support.

[10:25 a.m.]

Participating in the caregivers group facilitates learning, support and building empowerment and friendships. The biggest barrier in finding support people and professionals that know FASD…. They know what causes FASD, but they are not aware of the cognitive and physical barriers they face, the change in the structure of the environment that they need to have and that they will foster success in ways that they don’t know. Kim addressed some of this when she was speaking.

It was absolutely shocking to me when someone in a primary care setting, at-risk pregnancy support program, asked me: “What do the letters FASD stand for?” There is a serious lack of knowledge in the region. This is our greatest challenge for school-age youth transitioning to community living.

The parents that are parenting the youth or adults being diagnosed are very exhausted and broken. For many, their marriages are either in the process of breaking or have already broken. Family members are ostracized by their communities for what others deem as labelling them as poor parents, because they do not know about what FASD is like in a family.

I recently had a conversation with an RCMP officer about offering training for constables in the community in Vernon. I was told there was no need to have an in-service because there are only two in the area.

N. Simons (Chair): Two what?

B. O’Donnell: Adults with FASD.

Thank you for the same response I had. It was really difficult to continue the conversation in a professional way.

With Popova’s prevalence rate, cited in 2018, there should be 24,000 people living with FASD in our region. How can our justice report that there are only two? How can families be supported when there is this significant lack of knowledge?

One of our clients was very suicidal and was taken by ambulance to the hospital. A parent contacted us, and we went to the hospital ER to share the essential FASD diagnos­tic information with the physicians that were working with this individual. The client that we had was set to be discharged within a few hours. But with our information that we were able to share with the physician, this client was now admitted into mental health for three months. He was then transferred to another facility for another six months. Had he been discharged, he would have been right back. We have those revolving doors that go on and on in our medical system.

As our communities are growing and being educated, the diagnostic clinics have a role to play in support and education, until other trained service agencies are able to pick up the gap. We need caseworkers to facilitate youth and adults to navigate the social and justice systems. We need advocates to facilitate them gaining employment, continuing post-secondary education and trades programs. We need caseworkers that can help them budget, plan meals, buy groceries and learn parenting skills.

Community Living B.C. offers some of these services, but it takes so long to have our clients become supported by them because of the wait-list. Some clients are working, and they are informed that as long as they are working, they do not need the support of CLBC which, clearly, is not accurate. This is totally nonsense. Again, we have professionals who say they know about FASD, but their program planning does not reflect a healthy knowledge of the topic.

We need funding for education, funding for hiring care worker staff, and we need data to be collected to have verification of success and barriers in how we can build healthy supports.

There are four times more people in our population who have FASD than there are autism, but there is very little knowledge about the topic out in the communities. There is very little, if any, financial support for families and schools.

I wanted to point out that in my time working with the John Howard Society, I spent five years collecting data around: if there is support and education for individuals — adults who have FASD — what is the outcome? I wanted to let you know that recidivism over those five years went down to less than 3 percent. Those individuals, six years later, are still in their own homes. They still have their ID. They still have a phone. Some of them are now married and are starting their parenting.

[10:30 a.m.]

People with FASD do not need to live as victims. They can be empowered, and they can be given the opportunities. Because they missed it as youth does not mean that that needs to end now. Change to eligibility is not an issue for diagnosing youth.

We want access to do more assessments and have access to cross-ministry funding to cover the costs of the assessment. I just wanted to point out that in Alberta, there are close to 160 assessment clinics for adults. In this province of B.C., there are two — us and one other. The other assessment clinic will not go into the institutions to do any assessments there. So that leaves us.

As we financially try to gain stability and support on our own through our own fundraising, it’s a very vulnerable, at-risk situation right now, with supporting the 70 to 80 percent of people who are in our institutions who are in there with an undiagnosed FASD. Many of them do not even know why they’re there.

There was a ten-year plan for addressing FASD in this province. It ended in 2018. There was no reporting out to the B.C. public. No one was collecting and reporting data that would evaluate how effective the plan was. I was told by our MLA that it’s just a plan. We don’t have to be accountable to it. This can’t be our reality moving forward. If there was a data-collecting plan that was reported out on quarterly reviews, we would be able to make the differences that are so badly needed.

If cross-ministry funding could become involved with financial support and submitting data and access for assessment, supports and education across the province could happen at a much healthier pace. If we were able to dismiss the myth that children and youth are diagnosed so there’s no need to have an adult assessment clinic…. This was reported to me by the past Health Minister. He told me it was a waste of time and money to open adult assessment clinics, because they were all assessed and diagnosed as youth.

Providing access to health dollars to cover assessments will make a huge difference. This does not mean an open wallet forever. This needs to be a lot of dollars to work with. There are too many people that need to be diagnosed. Right now we have a wait-list of 15 who are not able to access funding to cover their assessments. The other individuals are able to access some banking. There needs to be more clinics, especially for adults in this province.

N. Simons (Chair): Well, thank you very much for presenting to us and for the work that you do with what I would presume to be a lack of real acknowledgment, except from those you work with, I’m sure. Knowing many individuals like the ones you talk about, I can only think about what earlier intervention could’ve done. I know them in jail, and I know them in the street. So thank you for doing what you’re doing.

We’re here because we know that there are weaknesses. Our job as MLAs from all parties is to try to improve things. Your testimony is going to help us in that effort. Thank you for that. Now we have questions.

T. Wat: Thank you so much, Bernadette, for educating us and enlightening us on how serious FASD is in B.C. I’m really shocked to hear that, when you mentioned Alberta has 160 clinics whereas B.C. has two. From your observation and experience, in terms of the total population, including the children and youth that have FASD in Alberta compared with B.C., in proportion to population, do we have less or more, or more or less the same? Do you know?

B. O’Donnell: The dynamics are almost the same if we compare populations — very much the same. In fact, Dave Garry did an analysis of this. He set up a chart around how many Aboriginal, how many other cultures, where the clinics are, who’s supporting them. It’s very much the same. It’s just that there’s a different way. Because in Alberta, there’s a cross-ministry that disperses the money across the whole province.

[10:35 a.m.]

T. Wat: I guess you haven’t had time to talk about the Alberta model. You said they’re cross-ministry. That’s something, maybe, we can learn from. We’d appreciate it if you can submit your written report so that at least we can pass it on to our government to see how the Alberta model is so much more effective. Obviously, Alberta has been many steps ahead of us from what you’ve said.

B. O’Donnell: Absolutely, years ahead. Saskatchewan, Manitoba. Ontario just gave $23 million for FASD. We have lots to learn, provincially, across our country.

T. Wat: Thank you, Bernadette.

N. Simons (Chair): Thank you.

Before Laurie, I was thinking that I’d be very interested in what came of the ten-year plan as well. So we’ll hope to find out.

L. Throness: Thank you so much for your passion and your, obviously, deep knowledge. This is really important — that you’ve appeared today.

I have a question about children. The focus of this committee is children and youth. I’m wondering if you can talk about how you assess children. What percentage of your assessments are child assessments? What is the earliest age you can assess a child at? Could you just talk about children for a moment?

B. O’Donnell: We have set a mandate for our agency to start at 15. That’s because that’s typically a time in transition, when families break down the most. It’s trying to get to that youth population before they get involved with the justice system and before they get involved with the drug and gang work that’s on the streets. We don’t do a whole lot of children.

However, our board is starting to look at that because Jordan’s principle is approaching us and saying: “Please, could you?” We have parents that come from Kelowna and say: “Can you do them, because my daughter, right now, is on a seven-month wait-list?” So right away we’re able to pick them up.

L. Throness: So it is possible to diagnose a child. How young can they be diagnosed?

B. O’Donnell: Oh, absolutely. Research and the new Canadian diagnostic standards tell us that if they are diagnosed very, very young, they’re diagnosed as what we call an at-risk category. If they’re preschool, they would be diagnosed with…. We’re at the top of the spectrum. They would be diagnosed as “at risk,” and then they are reassessed maybe three or four years later. But the supports are able to be put into place right away. Does that help?

L. Throness: Yes, it does. Thanks.

R. Glumac: I wasn’t aware of this ten-year plan. Who initiated the plan? Was it a good plan?

B. O’Donnell: The plan was fabulous. It was well written, well-thought-out. It came from the government, the parliament process. It had gloss pages. But nothing ever happened to it when it was done in 2018.

I was starting to look at it in 2015 and trying to find out: where is the data? Where’s the information? Where are we at? How much money has been used? How much money, blah, blah, blah — all of those stats that we need to know to see if a program is effective. That’s when I went to my MLA, and that’s when I was told: “It’s just a plan. We don’t have to be accountable for it.”

I don’t know where it’s at right now. But moving forward, having you guys starting these conversations, this is a really good time to start another plan that will work and that will be accountable to the public.

R. Glumac: And your recommendation to us is that whatever we come up with here, there is a regular reporting out and accountability to it so that people can follow it?

B. O’Donnell: Well, yeah. You have to know where we’re going. We have to know what the issues are. Are we resolving any of them? What other ones have come up? Celebrate the changes. We can’t just talk about what we’re doing. We have to have that evidence to demonstrate it.

R. Glumac: Yeah. Thank you.

N. Simons (Chair): I worked in the north for a while, and I remember there were public education campaigns for the prevention side, to try to support parents. From your experience, obviously, everyone you dealt with was a child at one point. Do you think that there are specific ways of reaching out to people on this issue that aren’t burdened with all of the societal commentary that goes with it? How do we direct prevention programs, and how do we let parents access without the shame? That’s a challenge.

[10:40 a.m.]

B. O’Donnell: I’ve got two things for you. One of our practicum students from UBC designed a five-module program that can be presented in the health or phys ed program for grade 8 to grade 11. That has been adopted and is being piloted right now in five schools in the province. POPFASD is placing it onto their website so that it can be accessed internationally — very, very well, well done. We’ll see what piloting responses come from that.

N. Simons (Chair): The other thing — there was the prevention question. How do we help families access or approach without feeling…?

B. O’Donnell: Well, we have to talk about it. We have to…. I find that Indigenous mothers are the ones who will bring their children in. It’s the professionals or the white, Caucasian people that are going: “Oh, I don’t want to go there. I don’t want to go there. I don’t want my child to be labelled.” What you’re really saying is: “I don’t want my child to have access and have a different life.” It’s kind of all around them. We’ve got lots of work to do around that.

The other piece around prevention is that I’m not seeing a whole lot of support for at-risk mothers who are pregnant. I’m not seeing PCAP programs that are available in the province. I’m not seeing them being advertised. I go into doctors’ offices, and there are no posters. There are no pamphlets: “This is where you can go.”

N. Simons (Chair): If I may, do you believe that sometimes it’s a fear of the ministry that stops some parents from accessing support?

B. O’Donnell: Absolutely. “They’re going to take my kids away.” I’ve had a mother who had her seventh child. “Why do you keep having kids?” She’ll say: “I just hope I can keep one.”

What we have done, actually, with child welfare, is that rather than having another parenting assessment, they will come to us and have an FASD assessment. Then, out of our recommendations, all the medical needs of the mom are addressed, and all the supports are addressed, and the kids are coming back home. They can parent; they just need the structure and the support. Without the diagnosis and without the medical intervention, it’s just a very dismal, sad situation that does not need to happen.

N. Simons (Chair): Did you want to add one more thing. Laurie?

L. Throness: A very quick question. I’m just wondering about your funding. How are you funded? The private fundraising…. Does the health authority give you any money?

B. O’Donnell: I don’t know how honest to be.

L. Throness: Please be honest.

B. O’Donnell: Our funding comes from grants, typically from the foundations. We haven’t been as successful with receiving one from the Vancouver Foundation. The Attorney General — not the present one — and I spoke, and she said that they would fund us, but that did not become the reality for us.

I work for free, and I have for the last five years. All of our money goes into client support and education programs. Some days, it’s kind of testy. We’ve applied for a gaming grant, and we’re really hoping that we can get something that is sustainable. That’s why I say that if there was cross-ministry funding to support clinics, we wouldn’t have that pressure. We’d be able to do even more fabulous work.

N. Simons (Chair): I just want to thank you — not only for presenting the information that you presented. But by showing us your commitment and really reminding us why people are working in this sector, it’s just energizing. We all really appreciate your time today.

B. O’Donnell: Thank you for this.

N. Simons (Chair): We’ll take a two-minute recess.

The committee recessed from 10:44 a.m. to 10:50 a.m.

[N. Simons in the chair.]

N. Simons (Chair): We are moving right along with our list of presenters. I’m very pleased to welcome to the table Donna Douglas.

DONNA DOUGLAS

D. Douglas: Hi there. I’m a little unprepared for this. I just came as a parent and a professional to listen and to hear what parents’ concerns and needs were, but as I…. Actually, with the first speaker, Kim, I’m like: “Oh, I can add on to that.” And then the next one: “I’ve got something to say about that.” I realized that I could probably just sort of add on to things that they were saying.

I just want to address one question that came up when Kim spoke. Someone asked if FASD is a spectrum disorder. Actually, FASD stands for fetal alcohol spectrum disorder. It is indeed a spectrum disorder. Like we’ve heard, they just don’t know enough about it. Depending on where the alcohol was ingested during pregnancy, different things happen. That’s why there’s no known safe amount. They just don’t know enough about it yet.

I’m also the parent of a 12-year-old girl with autism. We received our first diagnosis of generalized anxiety disorder when she was five. Then the next one was auditory processing disorder. Then we got — this is as she’s getting older — phonological dyslexia, then developmental coordination disorder, and then ADHD sub-type inattentive. Then, just before her tenth birthday, she was diagnosed with autism.

I mention all of those diagnoses just to say that if somebody has autism, it doesn’t mean they just have autism. Chances are they have at least one of those other things. The more neurodevelopmental disorders you are diagnosed with, the chances of you having another one increase.

Let’s say you’ve been diagnosed with ADHD. There’s a greater chance you’re going to have something else, as well. A lot of these diagnoses come with a lot of similarities. Children are sometimes diagnosed with ADHD when, indeed, they actually have auditory processing disorder. Children are sometimes diagnosed with ADHD when, really, they are suffering from trauma.

I also work for Westbank First Nation. I’m an Aboriginal support child development worker. I work with kids. It’s an early intervention program, but a lot of the kids I work with are school-age because of families not getting the early intervention when the children were younger for a plethora of reasons. We all know what those probably are, and I’m not going to go into that part because I don’t think that’s necessary.

What I really wanted to mention was how ASD, FASD and trauma all have very, very similar neurodevelopmental symptoms, for lack of a better word — specifically, executive functioning and emotional regulation. My daughter has ASD, so we have access. We actually get At Home funding as well as autism funding, so we are really fortunate. We are a white, middle-class family with educated parents. We are very fortunate to access that funding. A lot of families with trauma….

Well, first, FASD. As you’ve heard, there needs to be access for children to get not only diagnoses but funding. I have a friend who has a young boy who’s adopted, who’s not Aboriginal, and their key worker has told them: “You’ve just kind of got to make do with what we can offer you. Your child will not get At Home funding.” And there’s nothing else for them.

Then a child with trauma…. Their brains are all wired the same. Probably, if you looked at three MRIs, you wouldn’t know who was trauma, who was FASD, and who was ASD, because trauma is kind of like a brain injury. The child may not be born with that, but if they experience trauma in those early years — especially attachment, things like that — it affects the way your brain is wired.

What I don’t really understand is: if FASD and trauma create the same issues as ASD, why aren’t the supports and funding in place? They’ve got the same issues. They just have, sort of, different letters that are saying what the problem is.

[10:55 a.m.]

In my perfect world, there would be those supports. For a child to be diagnosed with trauma is pretty tricky. If you can’t afford a professional counsellor, you have to rely on child and youth mental health services through MCFD. That’s the route we had to go to when my daughter was five and had anxiety. We had to wait forever because there was only one counsellor in Kelowna that worked with children under five. Then she just kind of brushed us off.

Again, there are huge wait-lists to get through those programs. If you don’t have extended health benefits that can cover therapies, if you don’t have a parent who can advocate for…. Like, if the child doesn’t have…. My daughter is really lucky. I’m sure all her caregivers and her teachers hate me, because I never shut up, and I always advocate for her.

That’s kind of what I want to see. FASD and trauma aren’t just in Indigenous families. Yes, Indigenous families are really lucky, because now we finally do have Jordan’s principle. We do access those funds. For a lot of kids that I work with, we rely on Jordan’s principle for speech, for OT, for assessments through Okanagan Ability Centre. We don’t have to go through that wait-list through the IHCAN program, but there is a whole whack of families out there that don’t have access to that.

I belong to a Facebook support group called Invisible’s, which is parents mainly in Central Okanagan and South Okanagan. So many of these families: “Oh, we’ve been on the wait-list for over a year for an assessment.” This is a child that’s going to enter kindergarten. If that kid goes into kindergarten with no supports in place, no diagnoses, they don’t have access to a CEA, and that’s a whole other thing. A school gets $18,000 for a child with ASD, and they have to try to figure out: what’s the way we can make this work best for all our kids? That’s another conversation.

I could go down a lot of roads here, but I’m going to try to stick to ASD, FASD and trauma, how they are similar and how we need more wraparound supports for families and parents, because the best way to help a child is to help their parents. That’s what I have to say.

N. Simons (Chair): Thank you very much, Donna. Are you good for a couple of questions here?

D. Douglas: Yeah. I have to go to work after this, so they snuck me in.

N. Simons (Chair): All right.

Now, when you say you rely on Jordan’s principle…. My understanding of that principle is that access to services should be provided to all children whenever necessary, wherever, regardless of who the funder is. That will be sorted out later.

D. Douglas: Yes. That’s what Jordan’s principle came out of.

N. Simons (Chair): How do you implement? How do you use that, when you say you rely on it?

D. Douglas: How do we use our funding specifically?

N. Simons (Chair): Well, do you say: “I have a child who needs an assessment. They fall under this particular category.”? Is that how it works?

D. Douglas: It all depends on what organization you work for. We’re with WFN, so we are part of the Aboriginal supported child development program Each ASCD program looks different in each nation or reserve or organization that is being served. The program meets the needs of the community.

In our program, we receive referrals, again, from the community, from families. A child does not need a diagnosis to access our services. They just need to be identified as needing extra supports. We have WFN on reserve, WFN off reserve, First Nations on reserve, First Nations off reserve and then the general public. That’s sort of our priority list of who we serve.

We have a certain block of funding that is going to actually expire at the end of June, and we still have a whole lot of it that we still need to spend by then. We use that funding for assessments through the Okanagan Ability Centre. That might be an autism assessment. That might be a psych-ed assessment to determine if there are learning disabilities, if there are intellectual delays — things like that. We use that funding for behaviour consultants. We have this chunk for behaviour consultants, this chunk for SLP, this chunk for OT. We have a chunk that was allocated to the SƏNSISYUSTƏN school for a school counsellor. That’s how we use that funding, but every year, it’s an application process. It’s not something that we’re guaranteed.

[11:00 a.m.]

That funding, actually, is used for one of our supported child development workers. It’s accessed through that, but now her position will be over at the end of June. We’ll have to go through the application process again to have that person back with us in September.

Does that help?

N. Simons (Chair): I thank you very much. I really appreciate you taking the time and being inspired to say a few words to clarify. Yeah, I think that there’s a varying level of understanding of the sector in the public and among legislators. One of our goals is to inform and to make sure we understand the system. So we thank you very much for presenting.

D. Douglas: Did anyone else want to ask anything?

N. Simons (Chair): I didn’t see any.

Oh, Ronna-Rae, sure.

R. Leonard: Just quickly. Thank you very much for your presentation. It was interesting to hear you talking about trauma. I had a couple of doctors who have organized around…. There’s a film that they’ve showed and just talked about how that piece is often missing. So I really appreciate you bringing it up.

D. Douglas: Yeah. Read anything by Gabor Maté, and you can learn all about trauma from him. A lot of the kids that I work with are coming from intergenerational trauma.

N. Simons (Chair): Laurie has a comment.

L. Throness: I do have a question after all. So you said that FASD and ASD symptoms and trauma symptoms present a lot the same. Is it difficult to tell the difference? How do you tell the difference?

D. Douglas: That’s a really good question. You know, family history, things like that. If you read, there’s a great book called The Boy Who Was Raised as a Dog by Dr. Bruce Perry, who is a quite well-known child psychiatrist. He worked with kids who were at Waco and things like that.

That’s one of the things he talks about. Here’s this child that has, you know: “Oh, she’s got ADHD.” But it’s not working, the things that…. They’re treating her for ADHD, but nothing’s changing. The treatments aren’t working. So that’s how you can know: “Well, okay. We need to look deeper. We need to look at what else is going on.”

It turned out she had huge trauma. She got treated for the trauma. Boom. Well, I wouldn’t say, “Boom, things were better,” but you get the idea, right?

Yeah, that’s kind of how it is. We had no idea that our daughter had autism because she didn’t…. She’s a girl, and she is…. I hate to use the word “high-functioning”, but that’s sort of the term people use.

There are people that still go: “Your kid has…. She’s got autism?” She doesn’t look like she has autism because she doesn’t present as what a friend of mine called old-school autism.

It’s almost like, maybe, a method of ruling things out. As opposed to checking boxes of what they have, it’s maybe checking boxes of what they don’t have. This one little boy that we’re working with has just been diagnosed with a whole whack of stuff. We know there’s FASD there, but mom won’t admit to drinking during pregnancy — another issue that has come up. It’s kind of like: “If it looks like a horse, it’s a horse.” So we know that that’s what’s going on there.

We also know that he’s experienced trauma by seeing his mom being beat up, by seeing his mom in the hospital, by seeing his mom’s boyfriend OD in their bathroom and having the ambulance come — right? We know that he has experienced trauma and that that is going to affect.

Then you’ve got FASD. You’ve got trauma. And things just get all messed up. I just look at him. He’s seven years old, and I’m like: “My God, what does his future hold?” That’s why I do what I do. Thanks for listening.

N. Simons (Chair): We thank you for doing what you’re doing. Thank you very much for coming. I guess you have to go to work.

D. Douglas: Yeah, I have to go to work and work with one of those kids right now.

N. Simons (Chair): All right. Thanks for coming.

Welcoming to the table now — our committee is — David Gravells and Heather Hamlin Gravells.

Heather and David, come on up, and welcome to our committee. We’re glad you’re here. You have ten minutes to present, and then we’ll have five minutes if we have questions, if that’s okay with you.

HEATHER HAMLIN GRAVELLS

H. Hamlin Gravells: Perfect. Good morning. Thank you for the opportunity to present to you. I’m here to talk to you as a parent of two boys. David just turned 19 and Michael, 15. We live in Sorrento, rural B.C., two hours north of here in the beautiful Shuswap.

M. Stilwell (Deputy Chair): Well, thanks for making the trip.

N. Simons (Chair): Yeah, really.

[11:05 a.m.]

H. Hamlin Gravells: No problem. Michael, who’s at school today, has ADD and auditory processing disorder and attends high school in Salmon Arm. He is in grade 9. He has an IEP and a learning resource block to help be the successful student he has become.

This was not the case in middle school. We struggled to have a psych-ed for him. We felt, from an early age, that there was something missing. We finally convinced our pediatrician and school to move forward with an IHCAN test. This wait took about 12 months to happen, so more wasted time at middle school.

The reason I am — I said standing but sitting…. I do better standing. I’m an Anglican priest.

N. Simons (Chair): I might add that we are a standing committee, but we all decided to sit for the day.

H. Hamlin Gravells: The reason I am here today is to talk about our son David. David is with me today to be my support.

David, 19, lives daily with dysgraphia, dyslexia, ADD, auditory processing disorder and mild intellectual disability, as well as secondary diagnoses of clinical depression and anxiety. David has a psychologist and now a family doctor, having just graduated from the pediatrician, as well as a counsellor that we, as a family, engaged with when David was ten.

David has graduated with an Evergreen certificate from Salmon Arm Secondary, with the help of the Career Connections program and its wonderful staff. David is currently looking at his options for the future, using Community Living B.C. and Salmon Arm Community Living.

As a family, we moved here in 2009 from the Maritimes. We had some knowledge of David’s diagnosis, but it was a work in progress. It was a very slow process getting the full diagnosis. Lack of diagnosis delayed David receiving early intervention, which I believe could have delayed the depression. We believe that the depression was brought on by family stress, unemployment and the stress of not fitting in at school, as he had limited means to help.

Although David has five learning diagnoses and two mental health diagnoses and a safety concern for his own safety on a school file and an extensive IEP, David has never received any funding from any school board. He works hard at everything to become the adult he is. Any help David received in a classroom from an educational assistant was on the back of others who qualified for funding. He never had the right letters after his name.

The most concerning delay was around counselling. When David had his mental health break at the age of ten, we were offered 15 minutes of counselling about every three weeks by someone different every time.

As a family, we knew that this was not going to work for David. He needed someone he could trust, and he needed it now. The public health system really offered nothing in rural B.C. The wait times and driving were going to be ridiculous. So as a family, we sought out private counselling. We were broke, unemployed, living on income support and new to B.C. We would do anything to keep David from sinking deeper, or worse.

Because of my training and experience, I was able to see how serious it was. Because my husband is more levelheaded, he kept us all on track. We are very grateful for Debbie Thom, our counsellor. She was brave enough to meet David and take the challenge of counselling a diverse-abled child who was depressed.

The system is broken when there is no one to help in desperate situations and is more broken when there is no financial help when a family finds a great match. David still sees Debbie, and Debbie still offers the great discounted rate. We are eternally grateful for Debbie. She works out of Kamloops, which is 45 minutes the other way.

[11:10 a.m.]

I think that living with one or two diagnoses and an IEP, like David’s brother Michael, this scenario is okay. But with many issues, maybe the funding formula needs to be looked at. David regrets that he was never allowed to go on a field trip or participate in activities like his peers. It was a struggle, especially middle school. During this time, we had access to an awesome asset — Dr. Kevin Murphy, through child and youth mental health. He has since retired. He changed our lives, working with David’s reading and depression.

Without his family, my husband and I had to make some very serious decisions regarding our careers. I stepped outside of the ministry so that we could advocate for David and take him to counselling and multiple appointments. We would never have found the awesome help that we found.

A sideline. It’s a different ministry. Income support still required my husband and me to continue to look for work. There was no medical leave. We were highly employable. They did not see the necessity in us needing to take the time to help our kid, who wasn’t getting help from anyone else. So extra stress. One of the biggest hardships that we had to overcome as a low-income family was all of the non-medical expenses — vitamins, travel, private counselling, laundry, bedding, etc.

I realize this hearing is dealing with delays in diag­noses and assessments. As new parents, we were not aware that there were concerns. At 18 months old, a friend, also a speech therapist, noticed delays. We were fortunate and were able to move forward quickly. P.E.I. had an excellent preschool testing and therapy program. When we moved to B.C., we knew we would have to re-establish things like a pediatrician and speech and language, but the delays and complicated referral system seemed to slow down every­thing.

I need to emphasize: the earlier the better. Children need to be exposed to experts, in caring and loving situations, that can help. Mother Goose, StrongStart and other preschool programs are integral in discovering possible concerns. Then the appropriate professionals need to be available for testing. The more that can be done early, the more success will be found.

After putting all the work and support into our son, he has become a wonderful, compassionate adult, looking forward to a future that is unknown, and our other son is working his way there. We are very proud of our children and the patience they have shown for a system that sometimes did not seem to be working. Thank you for your attention.

N. Simons (Chair): Well, Heather and David, thank you both for being here. I just may say, it’s very personal but so important for us to hear and to think of other families with similar situations like yours.

David, I don’t know if you realize now that you are an advocate. You’re an advocate for other guys like you with similar issues and challenges. You being here, I want to thank you for that.

I’m going to ask committee members if they have any questions.

R. Singh: I just had one question. You mentioned that when he was in middle school, he was not allowed to go on field trips. Why was that?

H. Hamlin Gravells: It was the safety. When you have a safety concern around suicide and suicide talk or whatever, you’re not allowed to leave the school premises without…. I would even volunteer to go, but there were still huge concerns.

R. Singh: He was diagnosed, at that time?

H. Hamlin Gravells: At ten, yes, by a psychologist, not just me saying so.

R. Singh: But the school wouldn’t provide the support.

H. Hamlin Gravells: Because he didn’t qualify for CEAs, a CEA could not leave the premises with David. It was somebody else’s CEA, not David’s — and, apparently, is not qualified. It was complicated, and it has a lot to do with the administrator at the school as well — what they’re comfortable with. It’s very different every time you go to a school. Rural B.C. and the middle school that we attended really struggled with kids that needed extra help.

R. Singh: But things were different in high school, you say?

[11:15 a.m.]

H. Hamlin Gravells: Well, he was in a specialized program. We just skipped right through grade 9 — forget that crap — and put him in grade 10. We kept him back a year so that we had an age advancement and put him into Career Connections. It’s because I was noisy that that was able to happen. I asked. I met with Tracey Widdifield. She doesn’t like her name being used, but she is everything. She runs the Career Connections program. It’s just a bunch of diverse-ability, diverse-background kids that don’t fit into the academic stream and that graduate either with Dogwood or Evergreen, depending on their circumstance. It was way different in high school.

N. Simons (Chair): Glad to get out of middle school, I guess, eh, David. Yeah, exactly.

Laurie, you have a question?

L. Throness: Thank you so much for presenting today. We’re interested in systemic change, and you talked about a complicated referral system. I wonder if you could just talk about the complexity of that process, which seemed to have slowed everything down.

H. Hamlin Gravells: Well, we were new to B.C., so every­thing was completely different than it was in Prince Edward Island, where we moved from. In P.E.I., their referral system for a psych-ed was six years to get on the wait-list, so we did the first one privately through my health care plan.

We didn’t know where to start. We were at the school. We were talking to the counsellors about how to get the IHCAN test. Then finally a family doctor said: “You need a pediatrician.” We didn’t have one of those in P.E.I., because our family doctor did everything that a pediatrician does out here. There wasn’t a separation in rural P.E.I. So we needed a pediatrician. They needed to get to know David and understand that there were these needs, and then there was an initial psych-ed done.

We moved out here to Revelstoke first. It’s its own school district, and the psychologist lived in the school that David went to. They quickly did a psych-ed, like within weeks. It was an anomaly, I understand. But they were able to start the journey. We still knew there were things missing. Then I lost my job in Revelstoke. That’s the family incident that triggered lots and lots of stress.

L. Throness: We need help navigating the system. That’s what you’re saying?

H. Hamlin Gravells: Yeah. I read in one of the reports, quickly last night, that’s part of…. I’m on the Shuswap Children’s Association as an advocate now. Because he’s older and we’re able to do more, I’m just out there talking about this stuff. There are lots of kids like David. He’s not as unique as we like to think. We’re sorry that the story…. I hear it a lot.

Their report to this committee addresses that navigation piece and getting some people — so that it’s not just the parents that are dealing with it every day — to help other people through the system and figuring out MCFD, all the acronyms, everything. It’s as overwhelming as you find it.

N. Simons (Chair): Yep. Thank you for that comment.

Noting the time, we’ve got Teresa and Ronna-Rae.

T. Wat: Just very fast. Thank you for sharing your story with us, Heather. I don’t know how much you have gone through.

David, I want you to know that you are really a pioneer, to come out and support your mother. You should feel blessed that you have a mother who comes out and shares the story with us. Just keep working on the system, and the future is in store for you.

I just have a question. Now that he is aging out at 19, is there any luck for you to get on with Community Living to support David?

H. Hamlin Gravells: Yep, because we were early and in the system — Tracey Widdifield, the teacher that I spoke of, pointed us — and we had a social worker involved, we were registered when he was 17½. David gets the disability benefits, because we’ve been on top of it, which is exhausting.

T. Wat: Congratulations.

H. Hamlin Gravells: Yeah. We stay on top of it, because we want success for David. And I don’t tell David’s story without his permission.

R. Leonard: I appreciate your saying that very thing. Sometimes it’s easier to tell someone else’s story than your own. I just wanted to honour that you are also, probably for the first time, sharing, publicly, your story. When you’re living it, you don’t cry every day, but it finally comes out, so thank you.

H. Hamlin Gravells: I have written many MLAs, our MLAs, letters around funding and resources — and never hear back, I must say. This is great.

R. Leonard: I want to say congratulations, also, to David, for getting your Evergreen. I think that’s a pretty monumental accomplishment. Your mom said you’re proud, and I’m sure you are. I hope that takes you to the next step. Now, you said that he’s on disability. Is he connected with CLBC?

[11:20 a.m.]

H. Hamlin Gravells: Yes.

R. Leonard: Okay. I just wanted to clarify that.

H. Hamlin Gravells: David is attending Okanagan College at the moment, in a specialized program. [Applause.]

R. Leonard: Excellent.

N. Simons (Chair): Let the record show there was applause from committee members. David was pleased with that, I think, if I can read facial expressions accurately.

H. Hamlin Gravells: He’s pretty shy.

N. Simons (Chair): That’s okay. Next time you present at a committee, I look forward to it, because I think this is a good beginning. You have a good role model in advocacy. I really appreciate the fact, Heather, that you gave a shout-out to the people who have been very helpful to you. We recognize that in so doing, there are many people who go unrecognized.

H. Hamlin Gravells: I have another list. I wish it was longer.

N. Simons (Chair): We really do appreciate you taking the time, both of you. Thank you very much.

H. Hamlin Gravells: Thank you very much.

N. Simons (Chair): Shelley McGarry. Well, well, well. You’re going to make us go through some sort of a little exercise here. I’ll describe it so Hansard doesn’t have to take video. Nice to hear your voice again, and I recollect an earlier conversation some years ago. Welcome to the committee. You’re joined by…?

SHELLEY McGARRY

S. McGarry: I’m joined by Colin Farzen, who is the president of my daughter’s microboard.

N. Simons (Chair): Oh, a microboard. Okay. Maybe we’ll hear a little bit about microboards, because we haven’t yet during this consultation period. Shelley, welcome.

S. McGarry: Thank you. It is good to talk to you and actually see you in person.

Michelle, we spoke on the phone. I had moved my daughter from Quesnel, when I spoke with Nicholas, to the Island. We spoke briefly on the phone at some point. We’re now here in Kelowna, and the file is with Steve Thomson. They have been wonderful. He and Nan have just been amazing. But it’s nice to meet both of you in person. Thank you for the opportunity.

Yes, there will be a bit of, if I can just say before we start…. You folks get to stay where you are. But if at a certain point here…. Quickly — we only have a few minutes here — if I can ask you folks to come into the middle. It’s just a very short mindfulness exercise.

N. Simons (Chair): We’ve approved this with legislative security. Apparently, Rick, Rachna, Ronna-Rae, Laurie and Teresa will come into the centre of the horseshoe.

[The committee members participated in a group activity.]

S. McGarry: Okay. We’ll start. I’ll shake this up a bit, and then I’ll introduce myself after. If you’d like to come in. You each were given a puzzle piece. If you could bring that with you, please.

May I approach…?

N. Simons (Chair): You may approach the bench. Let’s make this into a TV show.

S. McGarry: Let’s move the box. That looks like a much better place.

What I have for each of you is a mindfulness exercise to work collaboratively together. You have not a minute to win it; you have 30 seconds to win it. You need to put the puzzle together. Thirty seconds — three, two, one. Turn your pieces over.

N. Simons (Chair): For Hansard’s sake, I’m observing as my committee members struggle to work together. They’re very cooperative. This is bipartisan cooperation in action. Look at that. Ronna-Rae, you can….

A Voice: There’s one missing.

S. McGarry: Did I hear you say there’s a piece missing?

Interjections.

S. McGarry: Absolutely.

I bring to you a self-advocate who is not here and her family. The piece that is missing is my daughter, Chelsea.

N. Simons (Chair): Aha.

S. McGarry: You will also notice that we are now outside of the box. [Applause.]

[11:25 a.m.]

[The committee members resumed their seats.]

N. Simons (Chair): We have a completed puzzle on the committee table.

Shelley, I think it’s you and your daughter.

S. McGarry: It is. Good morning to all of you members of the committee. I am Shelley McGarry, and I’m here presenting, particularly focusing on the systemic issues that I feel regarding transitioning, aging out, of youth, assessments and the eligibility processes. I’ll also interject specifics, as you have also seen here, on the case of my 26-year-old, who is cognitively aged two to six.

Chelsea lives with Down syndrome, autism, ASD, CDD, early-onset Alzheimer’s, dementia, SPD, type 1 diabetes uncontrolled, migraines, seizures, celiac, left Horner syndrome and the list continues on a medical end, resulting not only in multi-neurodiverse special needs but multi-complex medical. Two of her conditions are life-threatening.

I would like to state, however, that behind all these labels is an amazing individual, a real person, and no one, please, should lose sight of that. At every opportunity, I just like to bring her forward too. I am Chelsea’s comate, service provider, advocate and also a director of her microboard, Colin being the president.

In opening, as a parent, I firmly believe that every individual should have the chance to live the best life that they can. However, as individuals transition, we have found the system can very easily lose sight of the fact that these are real people and individuals, humans with additional needs and needs that do not change just because there’s a transition happening.

When any system loses sight of this, these individuals could be poorly served. We have done the presentation, and the puzzle piece that was missing became very apparent very quickly. When we work together collaboratively, we realize there’s something missing. It’s the individual, and we don’t want to lose sight of that.

Again, I point out “outside of the box,” because individuals with rules and policies that don’t work within complexities and multi-needs and co-morbidities get stuffed back into the box, and they get lost sight of.

I sit here having talked to Nicholas in 2011, and our situation has not changed. That is why I sit here before you today. If it can work effectively, the best interests of the client are at the forefront. But when I reflect on the experiences of how my daughter and other self-advocates I am aware of personally have been identified, assessed and referred for services by agencies in the adult world, I can only describe it as woefully inadequate.

The issues I present today are based on experiences we’ve had in our struggle to get Chelsea the support she needs to live. I’ve identified some major gaps I’d like to share.

Issue 1, the documented need for nursing services not being fulfilled for those with neurodiverse needs at transition time is massive. I am aware that resources available in the child world and youth world are not available in the adult world.

However, diagnosed need for nursing does not change at transition time or simply because somebody is one day older. What recourse do families have if neither CLBC nor HA have funding for diagnosed nursing services that are critical for the individual, particularly when these services were in place prior to age 19? Could this be age discrimination?

[11:30 a.m.]

Issue 2, assessments recommended for eligibility and conducted, particularly…. Again, I’m going to address nursing services based on specialist diagnosis. I’m going to also include ASD diagnosis, in our case. They are ignored in the adult world because of an unknown clinician’s opinion in the adult world. To ensure individuals get funding and, particularly, the required lawful level of support based on diagnostic testing, there can never be reduced funding based on a clinician opinion.

In Chelsea’s case — in contravention of her specialist’s diagnosis, recommendations and the lawful required base under CRNBC’s scope of practice — opinions led to the conclusion that she was not eligible for funding. Funding was cut after our conversations, Nicholas. It was cut and has not been reinstated. It was IF funding. This has been since 2011.

Issue 3, administrative fairness within the system. This next overview of a few issues shows a lack of administrative fairness. These are based on my experiences, but these gaps ring true with many families I have spoken to. We know this needs to be addressed at a system level.

So (a) under issue 3….

Wow. Are we there? Oh, that’s because of our crossword puzzle. Okay, I’m going to talk fast, guys.

Guidelines to ensure timeliness and distribution for updating client file contents. It needs to flow seamlessly, but it has not. There are continually repeat requests for submission of documents, and that is put squarely on the families.

Then (b) guidelines to ensure accuracy of client file contents. Families have to fight to get wrong information corrected and re-entered into patient files. The onus, again, is on the parents. The client has been lost sight of.

Then (c) guidelines for retention of the contents of files and adherence to policy. Documents so important in Chelsea’s case that FIPPA could not find a document that was critical and crucial for funding — it’s not there. They can’t find it. CLBC can’t find it. HA can’t find it. Therefore, we then are made to feel like we are lying or fabricating material when we return the documents back to them, but we are told that it’s no longer admissible because they don’t have the documents. That is a huge problem. How can documents so central to funding decisions be removed and no trace left behind?

Exceptions to policy. We were told by PCQRB that Chelsea’s file was not escalated at our request to upper levels of management. We feel unfairly targeted. At times, families feel it’s considered abuse when our objective needs are not met. Charter rights need to be respected.

In closing, I will state that I feel if we can implement the issues that I’ve skimmed over here, we can start bridging the gaps felt by families. If families are treated with respect, understanding and empathy, self-advocates and their families, at the forefront, will be seen and included. They are the primary caregivers. They are the constant in this. They can’t be sent away. We have the history. We need to work together, keeping the pieces of the puzzle together, to ensure the individuals receive the best level of individual, shaped support.

I have to tell you that was removed of emotion. I have one statement that comes from my heart. I’ve tried to stay objective in my presentation, but I sincerely hope that with your committee, you can work so that no other family goes through what Chelsea, I and my family have been and continue to be subjected to.

[11:35 a.m.]

I thank you for your time and for indulging us in a little mindfulness game. I open it up to questions.

N. Simons (Chair): Thank you so much, Shelley. We really appreciate your submission to this committee. It’s going to help us a lot and remind us of the difficulties that sometimes people face, often alone and often without the support that they need. Being here helps us. Thank you both.

We don’t have a lot of time, but I was going to ask if you can just describe the microboard and why and how you set it up.

S. McGarry: Absolutely. I was in Vancouver — Chelsea being a youth — and it was before we had diagnoses of ASD. We were struggling, absolutely struggling, and brought into Vancouver by the Down Syndrome Research Foundation. I went from being a university professor and all the money in the world to…. We lost everything. My husband passed away from the stress, and I’m sitting there in Vancouver with a suitcase and my daughter. Everybody assumed, because they brought us to Vancouver, that we would get help and support. That was just a continuation of no answers.

I sat in a phone booth, and I phoned CTV — I’m sorry; this is when I get emotional — and I said: “I don’t know what else to do. I don’t have money to pay Easter Seal. I haven’t eaten for two days. I fed my daughter, and I guess I have to go public.” They got me in touch with…. They said, “Stay on the phone,” like I was — and I was — an orphan in Vancouver in a phone booth, with my daughter barring the way with a suitcase.

They phoned Vela Microboard, and someone got in their car at night and grabbed food out of their kitchen, gave me money out of their wallet, their personal wallet, and took me back to Easter Seal. And we formed a microboard in 2005, so there’s the good side of it.

Now we have a president. We have people that are here to support and a mission statement, which is that people on our microboard are here to help the self-advocate and the family with a quality of life. Often, what it ends up with — isn’t it, Colin? — is we sit and we talk about these issues, unfortunately. They forge a relationship and give us a support system so that we don’t end up in a phone booth.

N. Simons (Chair): Thank you for sharing that story.

L. Throness: Thank you for sharing from the heart. You’ve had a difficult journey, obviously.

I wanted to say that when Chelsea transitioned from age 19, there were services that were cut off, as I understand it. What services still continue? Does she get CLBC funding? Could you just go through what she gets?

S. McGarry: Okay. Laurie, could I address what she needs or what she gets?

L. Throness: I’d like to know what she actually gets.

S. McGarry: What she actually gets. She gets some services, not what the transition plan recommended that CLBC created — partial, only, of CLBC services. That’s it, and she does require 24-hour, seven-day-a-week nursing-level lawful care, and there are no funds for that. Oh, that wasn’t your question. Sorry, that’s just my statement.

There are no nursing funds within CLBC funding at all for that. That was the reference that I skipped over, unfortunately, to the patient care quality review boards. CLBC, HA, CSIL, MOH all state unequivocally there are no funds for that in the adult world.

L. Throness: So she doesn’t live independently, then? She lives with you.

S. McGarry: She has to, yes.

M. Stilwell (Deputy Chair): You provide all her care, then?

S. McGarry: I provide the nursing-level care, 24-7 awake care. I sleep with a baby monitor beside my head. Every two hours, she’s awake. In eight years, I have not slept an evening. No.

M. Stilwell (Deputy Chair): You have no respite funding.

S. McGarry: Well, okay. We have an alternate care model. Yes, so the funding under the alternate service model, when we talk about creativity and how we do that in a creative way….

[11:40 a.m.]

The CLBC funding, the respite that I am allowed…. I can’t take a break because I can’t walk away, so we utilize that in a more equitable fashion for Chelsea and myself, and it’s something that works. Again, because of the training requirement, because of the extensive complexity of her needs, you can’t just even…. Nurse Next Door and agencies like that, that provide help — under scope of practice, lawfully, they can’t provide caregivers for that reason. Yes, respite we do have, but we utilize it in a different way. I cannot be…. This is respite. This is a respite for me, and I can only lawfully be ten minutes away from my house, linked by cell to the caregiver that’s there.

It’s workable. It’s my daughter; I love her. But it’s not sustainable. That’s why I keep coming, I keep talking, I keep going, and I keep calling MLAs. That’s why I continue advocating, because it isn’t right. We need to get this back — CLBC funding reinstated, to the level of where it should be and what CLBC designated as a lawful level at transition.

N. Simons (Chair): Shelley and Colin, thank you so much for coming in. Two presentations in a row that we’ve had a silent gentleman next to the presenter.

S. McGarry: Yes, he’s our Vanna White.

N. Simons (Chair): Oh, very good.

C. Farzen: I’m just the backup.

N. Simons (Chair): You’re the backup. All right.

S. McGarry: Thank you for your time. I think I went over, but thank you kindly.

N. Simons (Chair): That’s okay. Thank you very much.

We’ll go right into our next presenters. I’m happy to welcome the Secwepemc Child and Family Services — Tiesha Collins-Newton, Nicole Williams, Emily Edmundson and Willow George.

Come on up when you’re ready. Welcome to the committee. It’s very nice to see you here. We look forward to hearing your input.

SECWEPEMC CHILD AND FAMILY SERVICES

N. Williams: Weyt-kp, Nicole Williams ren skekwst. Hello, my name is Nicole Williams. This is Emily Edmundson, my colleague, and Willow George, my other colleague, from Secwepemc Child and Family Services. We are here to talk about Aboriginal children and families’ neurodiverse special needs, the system and what that looks like for myself. I used your guided questions, and we came up with some of the things that we would like to share with you today.

I am a caregiver as well as an early-years team leader at my agency. I do Aboriginal infant development as well. My oldest children that I’ve raised are 27 and 28, and they have FASD and ADHD. My youngest that I’ve adopted is four years old, and he’s at risk for FASD and other disabilities as well. He will have those IHCAN assessments and everything that my older ones did. Ryan and Serena are aware that I talk about their situations and that it is used to help children and families of Aboriginal ancestry with systems and stuff like that, and they’re okay with me sharing their story.

Let’s begin with Ryan and Serena. It was in 2005 when they came to live with me full-time. It was my first year of university. We managed for two years before Ryan was expelled from school. The school said: “He needs an assessment. He cannot come back until he gets one.” Serena was struggling severely as well.

[11:45 a.m.]

I sat down with their elementary school files and read through them. It took me an entire day to read through all the negative comments from every teacher, year after year. Their experience, to that date, was horrific in the system.

We started the process of their IHCAN assessments. Their social worker was against that because she did not want to have them labelled. But with the school behind me and the situation that we were faced with — I was working in an Aboriginal prevention agency as a prenatal outreach worker at the time, and I was not willing to give up my career at that point; this was in 2007 — I got permission to do their IHCANs. That didn’t come easily.

I continuously had to convince even the pediatrician who did the referral to IHCAN. Two years ago, he discharged one of the children on my caseload — point blank. Those gaps for that child have grown increasingly bigger. That child, in specific, will be requesting a different pediatrician to get services for what he needs. He is also globally delayed currently.

They did get their diagnosis, Ryan and Serena. At 19, their social worker said that they would not refer them on to CLBC services because they do not listen. With all the training in FASD that I had had in those several years, I said: “There’s a difference between the fact that they don’t listen and that they can’t listen.” They are lovely people, but they just don’t have the capacity to do that. So we did not receive CLBC services.

Four years ago I realized that they could request their files. We did that, and I realized that they were CLBC-qualifiable. I did go with them and speak to the same person that they used to see when they were teenagers and requested CLBC services, but they never got back to me. They never have received CLBC services to date.

Serena finally…. Four years ago I put her on disability. I did that with support from within my team and got her onto disability. Ryan refuses to go onto disability, but that’s his choice. Sometimes he does a lot better and can work and do things, but just needs…. He currently lived with me again last year until recently. He comes and goes, but he can do a little bit better than his sister, living with his disability.

Let’s talk about some of the gaps and barriers and challenges. We wrote a few notes together. The three of us brainstormed on this together on the way here. I have fifty children on my caseload, as well as the team leader position. This is the lack of prevention services that we are faced to work with: extremely high caseloads in vast regions. Travelling from Kamloops up to Salmon Arm, 150 kilometres, down to Bonaparte, another 150 kilometres, 100 kilometres south to Logan Lake and 100 kilometres north to Simpcw, which is Barriere — that’s our region that we cover. Not only do I cover supervision for eight early-years teams’ staffing, but I also have 50 children on my caseload in a huge region such as that.

Very limited services, comparing to mainstream, which is what…. We’re currently meeting constantly with MCFD, Lii Michif Otopemisiwak…. Mainstream, MCFD, LMO and ourselves are currently meeting, talking about the prevention services, how come we are suppressed so much in Aboriginal services for Aboriginal children and families, and the cultural aspect of providing services to these families.

[11:50 a.m.]

Being an Aboriginal woman, I know that some people are okay with receiving services from Emily, who is not Aboriginal. But there are many Aboriginal families who would only say: “I will only receive services from an Indigenous, Aboriginal person.” That’s a fact. Because of the historical trauma and everything that has happened with residential schools, the Sixties Scoop and all of that sort of stuff, there’s a lot of trauma. I feel like reconciliation is still quite a ways away.

When I talk about that, I would also like to talk about the lawsuit that has recently been filed against Ottawa for First Nations child welfare and discrimination, whether you live on or off reserve, and that if you choose to live more culturally and on a reserve, you receive less social assistance funding. So not only are we lacking in prevention services but also social assistance.

With Cindy Blackstock’s win in 2016, we finally were able to have our first Christmas party for Aboriginal children this past year, with bringing our debt of our agency in child welfare, because children in child welfare received half the amount of money that any other child in Canada received up until two years ago, from the beginning time of child welfare.

Now that they erased millions of dollars of debt from our agency and provided us with more adequate dollars to function and work with, we are able to now have a better quality of services, and like I said, we had our first Christmas party. It was very small with just some snacks and very simple gifts of less than $10, but it meant the world to the families.

The lack of referrals from school district 73 is a concern to our team as well. When you look at the services that our team in the early years is able to provide to children, we have holistic wraparound services, including infant development workers, supported child development workers, early years intervention specialists, direct-support workers and family enrichment workers. The list goes on and on. We’re able to holistically support the entire family.

Once the child moves to the school, the school takes over those services, and those services become really very, very minimal to the children, where they’re no longer seeing us on a regular basis throughout the month — and multiple services — but possibly one visit a year from the speech and language pathologist.

We get a lot of referrals from the NICU. We get a lot of referrals from pediatricians, social workers and self-referrals. Really, the school district — they’re not the people that are referring to us, even though there is some support that we could be providing as well, in addition, to the child at the school.

They kind of are the professional. They want to be the lead in this process, and they want to be the dictator of what services and when the child will receive them. They’re not really open to allowing us to come in and provide some additional supports to the children. They would rather put them into the janitor’s room and say: “Let’s modify your workday.”

The majority of our children are not welcome at school. Rather than letting us implement services, they’re being left in janitors’ rooms for entire days, weeks, months, until we beg them to have supported child development go in and look at what those struggles are for that child and how we can help to make recommendations of things that might work and provide some of those resources if needed.

The referral for services, for us to receive them, is a short time, but it also feels like a long time. When we look at the pediatrician referrals in our region, they’re taking six months. An IHCAN referral, from the start of trying to get one to the finish of getting the IHCAN, is approximately a year. That could maybe go into a year and a half sometimes, for some cases.

For a child, when we’re looking at success by six, which MCFD is now changing to success by eight, that is a huge amount of time in a child’s world where you’re building the foundation for a child.

[11:55 a.m.]

The lack of cultural sensitivity. So we’re supposed to use mainstream for direct support, because our ratio of prevention is 1 to 75. They currently are serving 90 children, and they have a caseload of one to three. But when we’re referred to use Mainstream in our area, we currently get push-back that they’re duplicating services, and they have to cut all services with our team, even though some of our team members are doing different things and in the home rather than being in the daycare or in the school.

Last month when we met at our meeting, they said that they were out of funds and that we no longer had access to use their direct support. So I’m pushing for more support for that area in our team and our capacity for servicing children.

Parents are also struggling with cognitive disabilities themselves that are sometimes not diagnosed. We have our parents unable to navigate the directive systems that they’re constantly being told — if we are not involved. To me, I am quite knowledgable about this area of work and the referral sources and the processes and all that sort of stuff.

For the school, once those children…. If they weren’t targeted before entering into the school system, their people at the school are telling them: “Go and get an IHCAN assessment.” They really don’t have any idea on how to go about doing that. So the need for our services is really, really, very, very huge. It is a life-changer for children.

When you look at children with disabilities and the ones that I raised, they lived with me from ten and 11 on in 2005. So they had been through seven different homes before coming to live permanently with me for the rest of their life.

Not every child will find the right home that is going to advocate for the right things for them. Finding those children is sometimes the hard part as well. The easy part is navigating the system with them and helping them to get to B when they start from A.

The wait-list for occupational therapists and speech therapists for the early years is approximately six to eight months, once we put the referral in. Sometimes, those parents don’t ever get the support that they need, because that centre, the Children’s Therapy and Family Resource Centre, only does on call. You can only call to book an appointment. You can’t text or email or anything like that. It has to be a call.

That is not family-centred, where our team comes from a family-centred approach. Any source of communication is accepted. The families that we work with might live on reserve. They might receive less social assistance, so they can’t pay for a phone plan, and they can text only usually if they have a phone of their own. So to access these services is really not saying that this is open to everybody when the system is made to fail for children who choose to live in a more culturally sensitive way.

If you are following, what I’m trying to navigate is that there’s still a long way to come before services are adequate and up to par and in the mean of where every other child is receiving services. This is what I have learned in the 14 years of working in prevention with children and families of Aboriginal descent.

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

N. Williams: Am I over?

N. Simons (Chair): Way over.

N. Williams: Okay. I thought so. I have lots more to say.

N. Simons (Chair): I know, and that’s understandable. I think you’ve touched on a lot of issues that haven’t been necessarily raised here. I’m going to start with a couple of questions. First of all, is your agency delegated?

N. Williams: Yes, it is a delegated agency.

N. Simons (Chair): Who’s your executive director?

N. Williams: Our executive director currently is Eva Coles.

N. Simons (Chair): Do you have a protocol agreement with the school district? Presumably you do, if you’re dele­gated.

N. Williams: I think there are protocols. But nothing is ever easy.

N. Simons (Chair): No. What I’m hearing from you is a fractured relationship. To me, it’s the kids who suffer when there’s that fractured relationship. So I’m hoping that that’s being worked on, because as a former director of a delegated agency, I expected school districts to be responsive and to have a good relationship.

[12:00 p.m.]

I’m not saying that it isn’t, but I’m saying that you’ve identified something that does not benefit the children. I know Cindy Blackstock was a director as well, with the Ayas Men in Squamish. Her successes have yet to be fully implemented. The Human Rights Tribunal is still trying to force the federal government to fund adequately.

It seems like there are the same kinds of challenges with wait-lists and such, so it’s really helpful for us to know about that and to hear about the complexity of service delivery when you have populations that are under different jurisdictions for funding as well. That’s really complicated. I’m hoping that with new federal legislation, that’ll be simplified. Obviously, that would be useful.

I wonder if my colleagues have questions. Laurie has a question.

L. Throness: Thank you. Wow. Just a whole lot of problems that you experience. We’ve been hearing, now, for three days, and your problems are not unique — not all of them — because we’re hearing about wait times across the board and lack of professionals and caseloads and things like that.

A couple of questions. I’m wondering about the caseloads of the people who you direct. There are eight people, I think.

N. Williams: Emily has 49 currently. She’s an AIDP and ASCD consultant, so does the dual Aboriginal infant and supported child development role. Willow will be moving into AIDP. She’s currently a family enrichment worker and has 27 families currently on her family enrichment caseload.

L. Throness: If you were to give one or two asks of government, what would be your requests of government?

N. Williams: Twenty-six years ago Romona Baxter implemented Aboriginal services on reserve for the first time through Nzen’man’ Child and Family Development Centre. When they started creating individual, unique Aboriginal services back then, I think that they started at a really low number, providing services to see if this was going to work. But those numbers never increased, so our support and prevention never came up. It has stayed quite low since that trial began 26 years ago.

I think that right now what I’m asking for and what I’m currently advocating — year after year, meeting after meeting, with CYSN and RCY and you guys and everybody who will listen to me — is that we need more services for Aboriginal children. Like I said, ASCD in mainstream has 90 children. We have 75. We have federally supported monies for 1.25 ASCD workers and only one direct support worker for those 75 children, where they have, I think, six consultants for the 90 children, and they have 30 direct support workers.

L. Throness: “They” being…?

N. Williams: Mainstream.

N. Simons (Chair): Just to clarify, are you talking about the mainstream system…

N. Williams: Yeah.

N. Simons (Chair): …or are you talking about a company called Mainstream?

N. Williams: Oh no.

N. Simons (Chair): You’re talking about MCFD. When you say mainstream, you mean off reserve?

N. Williams: There’s infant development, and then we’re Aboriginal. So they’re mainstream, who support services to every other child. Yeah, MCFD.

R. Leonard: Are we going to get a legend of all of the acronyms that we’ve been hearing?

N. Williams: Oh yes. Sorry.

R. Leonard: Well, you’re not the only one.

N. Simons (Chair): It’s part of the sector.

We’re running a bit late, but I’m going to ask, Michelle, if you have a further question.

M. Stilwell (Deputy Chair): I just had a quick follow-up on the school district stuff. You expressed a very large, vast area in kilometres that you cover. Is it only one school district that you’re working with, or are there multiple school districts? If there are multiple, is it one specific school district that you’re having the difficulty with?

N. Williams: It’s one school district in that vast area. It’s multiple schools in that district that we’re having the problems with. It’s pretty much across the board, most of the schools, but some are definitely worse than others. Like I said, no child should be locked in a janitor’s room five days a week.

[12:05 p.m.]

N. Simons (Chair): I’m just going to ask: did you make a complaint to the appropriate authorities? Because that doesn’t sound like it’s allowable, the way you describe it.

N. Williams: We do have an Aboriginal liaison who does that connection through the schools, and we do advocate to them. But we also are trying to not create enough ruffle that we are being kicked out of them completely. We’re trying to keep somewhat of a relationship with them, but we do make the complaints.

N. Simons (Chair): You’ve just given testimony to a parliamentary committee that’s broadcasting live across the province and around the world on the Internet. I’m not sure that feathers haven’t been ruffled.

You’ve suggested that schools put children into janitor rooms, not just on a daily basis but sometimes on a monthly basis.

N. Williams: Yes, that is true.

N. Simons (Chair): I’m sure that our committee will follow up on that. That doesn’t sound like something that should be just let go. I don’t know if you’ve reported it to the police or to MCFD, because that doesn’t sound appropriate — or the school board. Have you written to the school board saying: “We understand there are children…?” Like, are you talking about kids being locked in janitors’ rooms?

N. Williams: Well, they’re not locked. But that’s where they’re made to stay the entire day and, like I said, for months. Yeah. That’s where they go every day when they get to school. They do not sit in the classroom with the other children.

N. Simons (Chair): Wow. Well, that’s a bit shocking. Thank you for bringing that to our attention. Off the air, I’m going to ask you some more questions.

I think that concludes it. We appreciate very much you coming today and presenting to us. We will use the words you’ve given us to help us deliberate and, hopefully, improve the system, because that’s partly why we’re here.

Thank you very much, all three of you.

We’ll take a two-minute recess, please.

The committee recessed from 12:06 p.m. to 12:12 p.m.

[N. Simons in the chair.]

N. Simons (Chair): Thank you, guests. Thank you, people who have given us information.

Next on our list of presenters, I believe, is Carolyn Braun. Carolyn, welcome to our committee meeting. We’re glad you’re here. Thanks.

Welcome. You have the floor. I’m going to time…. I’ll give you a one-minute warning, if that’s okay with you.

CAROLYN BRAUN

C. Braun: Yep. That’s totally fine. I did plan a speech to try and keep myself on track, so hopefully it’ll all come together.

Good afternoon, everyone. My name is Carolyn Braun. Today I come to you as a parent. I have three children, two of them with special needs. I’ve brought my second son here with me today. He’s kind of hanging out at the back there.

Like many families, our path to a diagnosis continues to be a long and difficult struggle, specifically with my second child. We’ve always known there was something different and unique about him. From day one, he didn’t like to be held. He had irregular sleep patterns. The only way we could get him to sleep was by putting him in one of the battery-operated swings, and he’d sleep there for months.

When I talked to the doctor, he said: “Oh, it’s just his personality. He’s reaching all the baby milestones on time, so we’re not worried.” I said: “Okay.” So he started speaking, and then one day he just stopped. He would make noises or nod his head. I went to the doctor again, and the doctor said: “Oh no. He’s got an older brother. His brother is speaking for him, so he doesn’t need to.” I was like: “Okay, well, fair enough.”

At three, we were still on the same path, and I said: “This isn’t normal.” I requested some assistance, so the doctor gave us a referral to speech therapy and an occupational therapist. We started seeing the speech therapist at three, and waited on the wait-list for two years for an occupational therapist.

We finally received the assessment in the spring because he was headed to school in the fall. There were many concerns, but we were told: “Let’s wait and see how he does in school.” We get to school, and of course, the issues grew.

[12:15 p.m.]

He was suspended multiple times a week for behavioural issues. It was next to impossible for me to work. I tried working with the school, but the principal at the time said that they didn’t have issues in the school until lower-income families started coming there.

Parents petitioned to have my son kicked out of the school. Now, let’s remember that this is a six-year-old child. We were ostracized by family and friends that judged us constantly for our inability to parent our child. My son was never invited to birthday parties or playdates. If we were, it was once, and that was it.

Our pediatrician at the time was offering no support to us, so I requested a referral to another pediatrician in town. The pediatrician that I requested came back and declined to see us. It wasn’t until later I figured out it was his wife that was instrumental in leading the petition to have him removed from the school.

We finally got a new referral to a new pediatrician, but we had to travel to another city, which was an hour away. This doctor listened to our concerns and sent us home with a stack of paperwork for us, as well as the school, to complete.

Finally, out of this, we received the diagnosis of oppositional defiance disorder, sensory processing and ADHD. We were referred to youth mental health. When I got there, the intake worker laughed at me and told me oppositional defiant disorder was a copout diagnosis caused by parents who nag their kids. I was hoping that with the diagnosis, the school life would offer more support, but nothing changed.

Things got really bad, and we finally moved cities to get closer to our pediatrician, as well as a new school district. We attended as many programs as we could, including parenting programs and therapeutic riding, for two years. Slowly, things started to improve for our son. At that time, he was now in grade 2. Please keep in mind, my son didn’t change at all. It was that we were in a new school district with a supportive school that worked with us.

For the next four years, life was a roller-coaster. But somehow, we maintained constant communication with the school, as well as regular pediatrician visits. My son became a leader at the school, assisted other students with special needs and completed schoolwork often a year above his grade level.

At the same time, we were also on the wait-list for a psycho-ed evaluation, waiting for him to become the more critical student needing the assessment, which meant when you headed to high school.

When my son was in grade 5, things really started to fall apart, but somehow, he managed to get through. We were still told that psycho-ed evaluation was going to happen in grade 7. Unfortunately, my job took us to a new city and a new school district.

So here we are. He completely unravelled. He’s now in grade 7, hardly going to school. He’s been suicidal and failing classes. I fought again with our new pediatrician that we need a new assessment. I brought up, again, an autism assessment.

Now, this wasn’t the first time I had mentioned it to our pediatricians along the road, but I’ve always been told: “He’s fine.” I argued with the pediatrician, noting all the markers, including our initial diagnosis.

I was told: “He’s fine. He looks at me when I speak to him.” So I spoke to the school learning support teacher, who agreed with my recommendation and assisted to put a behavioral IEP in place at school. I went back numerous times to the pediatrician until finally, I got the referral for an IHCAN assessment.

Now, I was told it would be a minimum one, 1½, two years for our government-funded assessment. I broke down at that point. His life was crumbling. He had no joy anymore. He hated school. He didn’t want to hang out with his friends. He didn’t even want to hang out with us as a family. He sits in his room constantly, alone. Finally, he told us he wanted to die, and he had a plan.

[12:20 p.m.]

I took him to youth mental health for an assessment. I just walked in, and I was told by that intake worker that he did need to be seen there. But because I had access to limited family counselling through my work benefits, he was denied service through yet another government program. He had already been seeing that family counsellor through my work, who told us he was in crisis and needed more support.

Back and forth to the pediatrician, multiple times, multiple medications that haven’t worked, and this is where we sit today. I finally received the referral to the mental health program in April, which was after asking for three months, because the school and I kept advocating. But I haven’t heard from them yet.

We’ve opted to pay for a private autism assessment, and this assessment is over $2,000. We’re able to get the assessment now within six months. I’ve actually got it scheduled in two weeks time in Vancouver.

Today we asked: how has relying on government-funded assessments affected us? Well, I asked my son, and he said to me: “Mom, I’m always stressed because I don’t know how long it’ll be before I get help or even if I’ll ever, because I’m bumped off or down the list.”

As a parent, I fought to get assessments, to get a diagnosis, to get support, and it’s often to no avail. At this time, the only way we’re getting assessments and support is to personally pay for it. My husband has been unable to work full-time for the past year and a half due to the unpredictability of my son’s behaviours. I work shift work and juggle loss of sleep to assist, as well as miss work.

As parents, we need to feel supported by our pediatricians, and I shouldn’t have to fight to get a referral for my child. At the school and within our community, if we had a collaborative program set up where we could all sit down as a group — pediatricians, teachers, behavioural interventionists, child psychiatrists and us, as parents — we could work together to find the best solution for the individual child. I think that would be the best approach.

The system of our children being in crisis before they can get access to specialists and assessments is absolutely wrong. Early intervention is key. I reviewed the assessment of my son from the occupational therapists from when he was five years old, and there are so many red flags that were ignored. The same red flags are here today, plus many others. The symptoms continue to be diagnosed. However, the root of the problem has yet to be determined.

I thank you today for listening to me and giving us the opportunity to have a voice for our children.

N. Simons (Chair): Well, thank you very much, Carolyn. We all appreciate you. It’s not easy, obviously. We understood, as a committee, that we’d be hearing stories of challenges. They help inform how we report to the people who make the decisions. So your advocacy is really important. You bring with it…. Obviously, we can feel the weight of the challenges.

We can wave at your little guy back there. Right on.

I think my colleagues may have questions. You’re pretty succinct in your presentation. It was very useful. I had just wanted to ask one thing about this petition. I’ve never heard of such a thing. Without mentioning names and such, can you just tell us what happened there?

C. Braun: It kind of became a rumour mill. There was my son and another son. They were in, I think, grade 1 at the time, and both had similar behavioural issues in the classroom. This school did tend to be more one of the snobby schools, I guess, to say anything different. There was a petition going around between all the parents. It started out in our classroom and kind of expanded to others in the school that they were putting it forward to the principal because they didn’t want our kids in the school.

That erupted multiple meetings. The principal didn’t want us there, either. I fought with the principal. I ended up bringing the assistant superintendent of the school district to my meetings as my advocate.

It was a school district on the Island. That’s where we were living at the time. He was a big advocate for keeping kids with special needs and integrating them into the classroom, so he fought with me to put programs in place in the classrooms to help him.

As far as I know, actually, I don’t think…. That principal is no longer a principal at a school, from what I heard. Nothing came about from the petition, other than making it even worse. I had no friends at that school. No parents wanted to have anything to do with me, and of course, he had no friends either.

N. Simons (Chair): Okay. Well, thanks for that clarification.

Laurie has a question.

L. Throness: Your son has an assessment for autism coming up. Did you think of that earlier, or was this a thought that’s recent?

[12:25 p.m.]

C. Braun: It came up, initially, when we were first trying to figure out a diagnosis. The pediatrician — when we got the diagnosis of oppositional defiance, ADHD and sensory — felt those were the three main things to focus on. But there are so many other markers that fall under the autism umbrella, and even those three diagnoses are part of the autism spectrum.

He was always higher functioning. When he can do his work, he’s very smart, so sometimes he could fly under the radar until the behavioural issues came so much to light. It seems like the older he’s getting, the more difficulty he’s having keeping those in check. Again, it’s kind of like we’re reverting back to when he was younger.

L. Throness: Has he ever been assessed for FASD?

C. Braun: No.

L. Throness: That might be…. There’s a centre here. The head of the centre testified this morning, and that might be another avenue to check.

C. Braun: Okay.

L. Throness: I’m sorry to hear of the incredibly difficult time that you and your son have had.

C. Braun: Thank you.

N. Simons (Chair): Well, you’ve left an impression. I’ll tell you that. That’s a good thing.

I hope, in your advocacy — which is obviously ongoing and probably with different amounts of strength that you can muster — that when you write to an agency or organization, you copy your MLA, whoever your MLA is. That way your MLA can help with the follow-up. Our responsibility is to make sure that you have access to the programs and services that exist. It’s done in a non-partisan way. We can sometimes offer some advocacy as well.

C. Braun: That’s good to know. Thank you.

N. Simons (Chair): Thank you very much for coming today, and thanks little buddy back there.

Our next presenter is Tracey Vrecko.

Hi, Tracey. Welcome. Come up to the table so we can record your every word.

T. Vrecko: I have to apologize. I’m not prepared with a speech.

N. Simons (Chair): That’s okay. We can ask questions. You can give us an introduction. Tell us your experience. We’re happy to help by asking questions.

AUTISM OKANAGAN

T. Vrecko: Ben called me this morning to invite me here. We met with our MLAs yesterday.

I am a mom of a boy on the spectrum. He’s nine years old. He had his diagnosis when he was two, and he is nine now.

I am also the president of Autism Okanagan. We are a local non-profit organization. We’re actually the only local non-profit organization that offers services and programs to children all the way from birth to adulthood. We’ve been running programs now in our community for five years and offering support to parents.

The reason why we met with our MLAs is that there is definitely a disconnect with all of the organizations that are in the Okanagan. There are some amazing services and amazing programs out there but very difficult to find. As a mom, when we got our diagnosis when he was two…. Already you’re lost. You’re trying to find all these services and people to help you and your family.

Our vision, as Autism Okanagan, was always to be that go-to to help these families navigate through that diagnosis, which we have been doing. We’ve been working a long time to get a centre here, one location, so that parents can come and find out about all of the different services available. There is a centre right now that is open, but there are no programs being operated out of the centre.

[12:30 p.m.]

Pacific Autism Family Network out of Richmond has opened one of their spokes here in Kelowna. Autism Okanagan was instrumental in everything from finding the location to designing the space and even building cabinets. Hundreds volunteer-hours went in to getting the centre up and running. We’re currently tenants of the centre. We’re the only organization running programs out of the centre. It’s disappointing because this is an amazing building that sits empty.

Every day I have dozens of parents emailing me, wanting to know where to go, who to talk to, what services are available, where’s the regular programming. I mean, Autism Okanagan is…. We’re limited. We’re 100 percent volunteer-based. We’ve got seven board members. We run the programs that we can, and we are stretched. Every time we run a program…. We did a mom’s night out for moms who are raising children on the spectrum. It sold out in ten minutes. It just goes to show the need, not only for the children in the community but for the families and support needed for those families.

N. Simons (Chair): It’s helpful to hear. How many members do you have with your organization?

T. Vrecko: There are seven board members.

N. Simons (Chair): Seven board members. How many parents do you think you represent?

T. Vrecko: Oh gosh. We just did our Autism Walk. When it started five years ago, I think there were 200. There were 1,500 this year.

N. Simons (Chair): Is that a fundraiser for your organization?

T. Vrecko: No, it’s an awareness walk. It’s not solely our organization. AutismBC is…. It’s actually parent-run. The Autism Awareness Walk started with seven parents. They run it every year. It was eye-opening, as it is every year. We have a table there, along with other service providers and support. How many parents came up to me and said they didn’t know about all these different service providers and places that they can go to get help — I go back to this centre that sits empty.

Our vision and, in fact, the reason why Autism Okanagan was created five years ago was to partner with PAFN, Pacific Autism Family Network, to bring these services all under one roof, to have a navigator so that lost parent who just got their diagnosis has somewhere to call and just to know where to go.

N. Simons (Chair): When did that organization ask you to design and open that space? How long ago was that?

T. Vrecko: Five years ago.

N. Simons (Chair): So it’s been sort of an empty building for five years?

T. Vrecko: No. The conversation started five years ago. The centre in Richmond opened. They have a 60,000-square-foot centre in Richmond that opened in 2016. There was a mandate to open seven more spokes in five years — regional offices, they call them. They had to open two within the first year, and Kelowna is one of them.

N. Simons (Chair): Do you know where the other one is?

T. Vrecko: Prince George.

T. Wat: Tracey, thank you for coming to this presentation at the last minute. I’m from Richmond, so I was at the opening of the Pacific Autism Family Network Centre. I’m quite disappointed to hear that you are the only organization in the centre here in Kelowna.

I have been observing the Pacific Autism Centre in Richmond, and they have been doing extremely well in the sense that they have been very effective in engaging the community to support them. For example, the Chinese-Canadian community has never actually very engaged in the autism area, but just a couple of months ago, they all came together and fundraised for the Pacific Autism Network. They have set up a wall of honour. Everybody put their name there, with an airplane, and then they came up with a lot of money. I’m trying to get more of those who can afford to donate money from the Chinese community. I’m actually arranging another meeting.

I just want to know here, in Kelowna, how active they are in trying to get some public donations? I know that you cannot depend on the government all the time for all the funding, right? So how actively is…?

[12:35 p.m.]

T. Vrecko: I guess I can’t answer for Pacific Autism Network. Autism Okanagan — we do our own fundraisers. I don’t know what their fundraising efforts have been here.

I go back to, again, our vision. The direction that these spokes were to go in would be having a community partner, which again was why we created Autism Okanagan five years ago. Our needs in Kelowna are different than they are in Richmond, than they are in Prince George. We know our community, as the local organization. We want and still would like to run the fundraisers, run the spoke, but the direction is from Richmond.

To answer your question, I don’t know what fundraising efforts they’ve done. There are no programs being run out of the centre. There have been no support…. There’s supposed to be technology going back and forth. There has been nothing run out of the spoke. It’s been open now for over a year, and we are the only tenants there.

T. Wat: So how much support do you have from the provincial government?

T. Vrecko: We have no support from the provincial government.

L. Throness: How about the centre itself? It sounds like it got some kick-start funding from the province.

T. Vrecko: That is my understanding, yes.

L. Throness: But no ongoing program funding.

T. Vrecko: No.

R. Leonard: Just very quickly. Thanks for stepping up and providing us a little bit of a picture of what’s going on here.

We’ve heard from a lot of parents who either have worked with the early intervention programs through the child development centre or end up finding their way through the various resources to get assessments.

This is a building, which is all well and good, but in the end, what people need are those assessments, right? I’m wondering what you, as an organization…. Where do you fit in at all for the parents in the current situation, other than the fact that there’s this building that’s sitting there empty?

T. Vrecko: Right. I agree with you on the wait time for assessments. The need is to get these assessments done. Autism Okanagan comes after the assessments. They come as support, once you get the assessment.

Actually, I can speak from personal experience. When we got our assessment, I got a red folder with three pamphlets. I got my assessment, but I was not given any information about where to go from there. That’s where Autism Okanagan comes in. We help those families with support, with options of where you can go.

R. Leonard: So you’re the fourth piece of information in the file folder now.

T. Vrecko: Right.

N. Simons (Chair): That confirms some other things we’ve heard about parents being blindsided by not knowing where to look or what to learn.

I really appreciate the fact that Ben suggested you come up. Thank you very much for doing so.

I believe that that concludes our meeting, so thank you very much. The committee will adjourn.

The committee adjourned at 12:38 p.m.