The committee met at 9:18 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. We’re very pleased to be in Victoria and meeting on the land of the Lkwungen-speaking people — specifically, the Songhees and Esquimalt First Nations.

On behalf of the committee, I’d like to thank everyone who has been able to give us their perspective on this issue that we’ve decided to look into in detail — recognizing, as we discussed when we were contemplating this topic, how challenging time was for parents and for people working in the sector. We acknowledge and appreciate people’s generosity with their time and with their insight.

Our committee is made up of MLAs from all parties. Our role is to raise awareness and understanding of the child- and youth-serving system. To that end, we are 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 their perspectives and approaches to supports and services. Tomorrow we’ll be finishing our public hearings in Surrey. So far, over the last few weeks, in addition to sitting in Victoria for the final week of the Legislature, we’ve visited Terrace, Fort St. John, Prince George, Kelowna, Castlegar and Nanaimo.

We’ve heard from parents and caregivers, service providers and other organizations about assessment and eligibility processes and how services can be improved. We’ve received many written comments since the consultation opened in mid-April, and we continue to accept them until five o’clock on Friday, June 7. If you’d like more information, you can learn about the project at the Legislative Assembly website.

[9:20 a.m.]

We will consider all the input we receive, and we will use it to make recommendations to the Legislative Assembly in a report, which will be released in the early fall.

To ensure that we can hear from as many people as we can, we’ve set aside ten minutes for the presenter and five minutes for questions from members of the committee. It’s sort of going to be our role to make sure we stay on schedule because we have a very packed witness list today. Our meeting is being recorded and transcribed. All audio from our meeting is broadcast live via our website, and a complete transcript will be posted.

For those in the room, I’ll ask you to introduce yourselves. Then we’ll go to Rachna after, who is on the phone.

R. Leonard: Hi, I’m Ronna-Rae Leonard. I’m the MLA for Courtenay-Comox, just north of here.

M. Stilwell (Deputy Chair): Hi. I’m Michelle Stilwell, the MLA for Parksville-Qualicum and the Deputy Chair of the Select Standing Committee on Children and Youth.

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

N. Simons (Chair): Thank you. We have, on the phone, Rachna.

Would you introduce yourself, please?

R. Singh: Hi, this is Rachna Singh, MLA for Surrey–​Green Timbers.

N. Simons (Chair): Thank you. I believe that we don’t have anyone else on the line. Other members have been unable to join us today, but we will be carefully considering their testimony — not just the submitted testimony but the transcript of those meetings that members have been unable to attend.

We are also, as you can see, assisted by the Clerk’s office: Jennifer Arril, Clerk of Committees, as well as — who is back there? — Stephanie Raymond, helping us stay organized. Thank you very much.

Michael Baer and Amanda Heffelfinger are joining us from Hansard here in the press box, high above the arena, and in the other buildings scattered throughout the legislative precinct.

Without further ado, I’m pleased to welcome, from the B.C. Psychological Association, Dr. Kelly Price.

Welcome to our committee. Thank you for being here. You have ten minutes.

Presentations on Children and Youth
with Neurodiverse Special Needs

B.C. PSYCHOLOGICAL ASSOCIATION

K. Price: All right. Thank you very much. Yes, I am Dr. Kelly Price. I am a registered psychologist, specializing in pediatric neuropsychology. I’m an expert in the assessment of all of the neurodiverse conditions that you’re talking about today and a lot of other diverse neuropsychological conditions that you may have never even heard of.

I have faculty appointments in psychology, psychiatry, developmental disorders and medical sciences at the University of Victoria and the University of British Columbia. I was the senior psychologist in Island Health and senior clinician in BCAAN, the B.C. Autism Assessment Network. I was a founding member of the complex developmental behavioural conditions program. Those two are the public bodies responsible for all of these diagnoses.

I have scientific publications on autism, FASD, ADHD and related areas. I provide, formally, advice and guidance to CYSN and CLBC. Presently, I do autism assessments for BCAAN and privately for those few families who are able to afford to pay. I believe I’m the first diagnostician and, definitely, the first actual psychologist that you’ve spoken to so far.

The B.C. Psychological Association wasn’t invited to present here, which is unfortunate. As such, I volunteered to speak today on behalf of that organization that represents about three-quarters of British Columbia’s 1,200 registered psychologists. I’d also say that in order to speak to you today, one child with suspected autism won’t be seen. I had to cancel their appointment so I could come here. The wait-list just grew. I hope that the results of this presentation will be worth making everyone wait a little bit longer.

Your question today is driven by wait-lists for eligibility assessments, but what you’re actually asking about, which you might not actually know, is wait-lists for psychologists. Did you know that psychologists are the only doctors involved in all of these diagnoses? Did you know that all intellectual disability diagnoses are done exclusively by psychologists and school psychologists? Or that all FASD diagnoses require psychologists to do most of the assessment work? Or that almost all autism diagnoses in B.C. are done by psychologists?

Psychologists are involved in, essentially, all BCAAN and CDBC assessments. We are the experts and the workhorses of the neurodiversity field. So years ago, I wondered when someone was going to launch an inquiry like this, because years ago, while the wait-lists were growing, we stopped being able to recruit psychologists into the public sector, especially the BCAAN and the CDBC networks.

Everyone from the unions to the Health Employers Association of B.C. knows that posting a psychology position is a bit of a joke. No one applies. The Provincial Health Services Authority has even done a study on it, but no one will take any responsibility. The buck passes.

[9:25 a.m.]

Publicly funded psychology in B.C. is in crisis, and no one can provide leadership. Systematic neglect of public funding for psychology is a choice that government has made. The Ministry of Health has created policies that essentially ration publicly funded psychology assessments, that ration publicly funded neurodiversity assessments.

Government has chosen, through its inaction, to limit access to services and supports for children and youth with neurodiverse special needs and for their families. It is government inaction that has pushed over two-thirds of psychologists away from the public system and into private clinics.

Psychologists are the linchpins in the wait-lists for these assessments. The psychology crisis manifests not only in long waiting lists for developmental disorders but also in the erosion of the mental health system — increasing rates of untreated anxiety, the opioid crisis, even the family physician shortage.

We came to you. We came to you about four years ago asking for help, asking for help for our clients and for their families. BCPA and the B.C. Pediatric Society co-wrote a joint submission to this select standing committee, highlighting the need to integrate psychologists into the health care system and asking for your help. A copy of that was emailed to you, as well, for this presentation.

We showed you the stats on the money that could be saved — not spent, saved — by integrating psychological services into the health care system. We asked you, four years ago, to consider according registered pediatric psychologists the right to bill MSP directly so that families don’t have barriers to access to diagnosis and care — just like you let the midwives and other allied health professionals bill MSP, just like psychologists in leading jurisdictions like Australia and the Netherlands, just like the Mental Health Commission of Canada recommends.

It will save you money, save your constituents money. It will be more efficient. It will be more equitable. It will help your most vulnerable constituents. And just so you don’t think that this is self-serving, the only people who stand to lose money on this is us, the registered psychologists. We can currently set our own rates.

You may have read the report that we sent in a few years ago. There were recommendations in the report that was produced by this committee to strengthen services delivered by psychologists to children, youth and young adults through public funding, but nothing happened. No one ever talked to us. A lot of money was spent and a whole ministry was built, but four years later, the problem is still there.

Now you have the answer to addressing wait-lists for eligibility, and it’s in your scope to achieve. We ask you again. To shorten wait-lists for publicly funded assessments, talk to the psychologists who actually do these assessments. Ask us. We’ll do them. We can do more. We can do them well. We can go beyond the diagnostic label and talk about function. We literally wrote the book on functional assessments. We’ll create evidence-based treatment plans that actually work. We’ll help these children. We do help many of these children already.

British Columbia’s many governments have accepted for far too long that a two-tiered mental health and psychological health care system is good for families. You’ve heard in this process that it is not. I can tell you that the system works really well for a family with money on that top tier. People who have money and benefits don’t have to live with barriers to their children’s health and development to their futures. But many families can’t afford to pay to get this kind of help for their children, and that’s not fair to the kids.

Both the BCPA and the B.C. Pediatric Society believe that children’s psychological health needs are important health care issues. Mental health disorders and neurodiverse conditions are all important and complex health issues. You’ve not heard from anyone who disagrees that these are important and complex health issues.

Now you have role in intervening in a system where disabled children’s health outcomes are mediated so blatantly by their parent’s wealth. The time has come for someone to provide leadership here, to direct the Ministry of Health to step up and do their job.

If you want to look at better ways to do eligibility assessments, please talk to us. People talk all the time about looking at function rather than at a diagnostic label. It’s a great idea. Look to the international classification of function. Psychologists wrote the book on that. In fact, intellectual disability is a classic example of how a functional diagnosis can be done. To some extent, even FASD is actually a functional diagnosis that could be tweaked to make it more so.

Functional diagnoses would keep more children from falling through the cracks, but you have to do a functional diagnosis properly. Again, we know how to do this. Please talk to us. We have a lot to say.

In summary: (1) all neurodiverse children require access to psychologists; (2) psychology is not publicly funded; (3) there will be no equity for neurodiverse children until pediatric psychologists are publicly funded.

N. Simons (Chair): Excellent. Thank you very much, Dr. Price. I was thinking Dr. Price was another Dr. Price, of course, but thank you.

K. Price: Yes, there is another Dr. Price.

N. Simons (Chair): I was thinking: was I getting that wrong?

K. Price: No.

[9:30 a.m.]

N. Simons (Chair): I appreciate very much your candour, your directness. For some of the questions, when you said, “Did you know?” I’ll say that I didn’t quite know, but I’m not telling you which of those questions.

K. Price: Actually, I’d suspect that probably most people don’t know that. I’ve read through some of the things that other people have talked to you about, and there isn’t a lot of understanding about how that happened.

Most people think that psychology is publicly funded. Most people think that autism is a medical diagnosis that’s just done by physicians, but it’s really very rarely done by a physician and almost never done by a physician on their own.

N. Simons (Chair): Thank you. We have some questions from committee members.

R. Leonard: One of the things that we’ve been hearing throughout the whole process is the disparity in supports for people who aren’t given the diagnoses of autism. Given that you do diagnoses of the full spectrum of neurodiverse needs, can you shed some light on what the gaps are in terms of how we are treating those who don’t have autism and the whole gamut?

K. Price: Well, I would never say that children with autism receive too much funding or too much assistance, but there is a huge gap, yes. Children who have intellectual disability receive fairly little direct support in their early years. They’re high incidence conditions, so the schools are apparently prefunded to help those kids, but those are the kids who, I think, would actually do well with a lot more service at school.

There’s a bit of a paradox. If you have autism, the belief is, of course, that intervention can help. If you have intellectual disability, there’s a belief that intervention’s not really going to help. If you have autism and intellectual disability, somehow we believe intervention will help. But, really, intervention could help the kids with intellectual disability as well.

There are more than three conditions. There are more than just autism, intellectual disability and FASD. There are a variety of neurological conditions. There’s ADHD, which can be as severe or worse than a lot of these conditions. Because we focus so much on diagnoses and diagnoses where there’s been a lot of political will from parents to bring those ones to the fore, there are a lot of conditions that just are being missed. The cracks are huge.

M. Stilwell (Deputy Chair): Thank you, Dr. Price. I actually have a science degree from the University of Calgary, and I majored in neuropsychology. I appreciate your passion for the work and for using your voice to share with us, even though you’ve shared before and feel like you haven’t been heard.

I just have a couple of questions around numbers. How many members are in your association?

K. Price: There are about 900, I believe.

M. Stilwell (Deputy Chair): That’s, obviously, not all psychologists in British Columbia. How many more are there?

K. Price: There are about 1,200 registered psychologists. The average age is something like 58 or something like that. So there will be far fewer registered psychologists in a few years.

M. Stilwell (Deputy Chair): How many of those are private versus public?

K. Price: About two-thirds are in the private system. About one-third are in the public system. About 10 percent of those are in hospitals — the rest in other publicly funded community organizations.

M. Stilwell (Deputy Chair): One final question. Obviously, big wait-lists for diagnoses. How many assessments are you doing in a year?

K. Price: That’s kind of a complicated question, because I do other things as well. There was one year when I did nothing but autism assessments. I could do about 100 — some of my colleagues rolled their eyes at that number — and that was working full out.

M. Stilwell (Deputy Chair): They rolled their eyes because that’s not very many?

K. Price: Because that was so many. I believe the standard for a school psychologist is to do about 40 assessments a year. Private practitioners probably do more, because they’re paid per assessment, but 100 is a lot of assessments.

M. Stilwell (Deputy Chair): One final question. Do you track how many of those assessments where children are actually getting the diagnosis versus being denied the diagnosis of actual autism and being targeted to…?

[9:35 a.m.]

K. Price: Yeah. The B.C. Autism Assessment Network tracks that. A few years ago it was only about a third of kids who I saw in the hospital system who would get a diagnosis. I was seeing, at that time, primarily kids over the age of six. That number would be higher for the kids who are under six.

More recently they have put in some systems to try to go through referrals to make sure. There’s no opportunity for a physician to make a referral to a psychologist, except to make a referral for autism, especially for the young kids.

Physicians will often refer because maybe it’s autism or some other developmental condition, and the kid would really benefit. They have tried to put in more systems to try to vet some of those referrals to make sure that it really is a question about autism. The numbers that are being diagnosed are much higher now than they used to be.

L. Throness: Thank you, Dr. Price, for your insights. I have a few questions. How many neurodiverse disorders are there? We’ve heard a variety of things over the past week or so.

K. Price: Well, it depends on how you count it. The Diagnostic and Statistical Manual of Mental Disorders has a chapter on neurodiverse conditions. It sets out what the diagnostic criteria are for intellectual disability, for autism and then for a variety of other conditions. I’d say, off the top of my head — I don’t know — probably about 15 or 20 of them in there.

Then there are kids who have medical needs of various sorts that have an impact on brain development. Then there are kids who have functional impairments in, for example, memory or some specific form of cognitive ability that don’t necessarily meet criteria for a particular condition but meets criteria for something else.

L. Throness: So we’re talking dozens?

K. Price: Oh yeah. That’s why people want to move more toward a functional diagnosis. If you just start to create more and more diagnostic labels, which are important and helpful…. But if you just focus on helping the kids who have those, there’s going to be a lot of cracks in between versus looking at kids actual functioning, measuring it in a scientifically validated and reliable manner and then basing decisions on that.

L. Throness: One more question. I’m wondering what your specific ask of government is. We were in Fort St. John, and there were people from the school board — some psychologists. They had seven FTEs open, and they could only fill, like, 3½ of them. They couldn’t get anybody to apply.

Is the problem that there are not enough psychologists being turned out by the system? Is it that we’re not paying them enough? They go to the private system because they’re paid more? What is your ask of government?

K. Price: There are not a lot of psychologists, and B.C. trains a lot at the doctoral level. But there’s a requirement to do a pre-doctoral residency, so most of the residency programs are outside of British Columbia.

We train them, and then they have to move away. Then we hope to bring them back. As I’m sure you’ve heard from other industries, the pay in B.C. is not as good as it is elsewhere, but it’s particularly poor for psychologists in British Columbia. Then the publicly funded system just does not compare to the privately funded system.

Many psychologists are very devoted to working with these conditions with these children. Many try to maintain at least a half-time appointment in the public system and then do private work outside. The pay is very poor, and you can hear the frustration in my voice about listening to psychologists, because it’s not just government. It’s many layers of people who know that there’s a problem, but aren’t in a position to be able to help psychologists determine how we can be most helpful.

Most psychologists would like to not only diagnose kids but also treat them. The treatment isn’t really well-prescribed for psychologists.

L. Throness: Doctors are basically independent, private operators. Would the answer be to put all psychologists on the same kind of footing as a doctor?

K. Price: There are about 800 psychiatrists in British Columbia, and about 1,200 psychologists, as I said. When you look at the mental health crisis, and you wonder how are we going to get more assistance to people with mental health issues — neurodiverse conditions being a subset of mental health. It’s all the same organ. It’s all the same stuff.

When you look at trying to help that system move forward, you have a huge, untapped group of doctoral-level, doctorally trained experts in mental health who can step in and provide services to the people who are most at need.

[9:40 a.m.]

A lot of psychologists do work that we might not actually think is something that society really needs as much as their own interests. If we made it so that people with significant mental health issues could go to a psychologist without having to pay out of pocket, I think we’d see a big change in the mental health system. We would more than double the number of doctors in the system.

When you look at the family physicians, family physicians spend about 50 to 70 percent of their time — that’s a documented number — working on mental health issues. A lot of psychologists have suggested integrating psychologists right into primary care so that instead of the family doctor, with all their medical knowledge, working with patients who are very complicated and need more than just seven to ten minutes of assistance…. If you put a psychologist in that office, you’d get better care, because that’s the psychologist’s area of expertise, and you’d save the physician’s time so that they can actually practise medicine rather than mental health care.

The numbers on that are staggering. As I said, having a psychologist in integrated medical practices saves the system so much money that the psychologist’s salary is paid for. When it doesn’t happen, it just boggles my mind that the health care system can be so penny-wise and pound-foolish.

N. Simons (Chair): So well said. Thank you very much.

Just so you know, we might’ve detected a sense of frustration in your voice, but that’s because we’re very seasoned at listening to people with their requests or comments about government.

To be fair, that’s one of the reasons why we’re engaging in this process. It’s because we recognize, I think, that there has been a dearth of public commentary on this subject. We usually hear about it when something goes wrong or there’s a complaint.

K. Price: Exactly. The wait-list for autism is just a symptom of a much larger problem in psychology and mental health care.

N. Simons (Chair): I think you’ve made the case very well. We went over time, but we really appreciate your willingness, your eagerness to let us know your thoughts. I really appreciate it. We all do.

K. Price: Sounds good. Please talk to me again.

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

We’ll take a half-minute recess.

The committee recessed from 9:42 a.m. to 9:44 a.m.

[N. Simons in the chair.]

N. Simons (Chair): Interesting presentation. They will continue, I’m sure, with Mary Souter.

Just so you know, we have a timing mechanism that’ll go green when there are two minutes left out of the ten. Thank you very much. I appreciate your presence here. You have the floor.

[9:45 a.m.]

MARY SOUTER

M. Souter: I am a parent of two neurodiverse children, one with ASD and one with DS. I am also a special education non-teacher social worker with a BSW and a master’s in special education. I also have level B assessment qualifications. I’m going to go through you guys’ questionnaire to kind of help you guys with that.

My understanding of how neurodiverse children and youth are identified has evolved through my eventual qualifications as a level B assessor and then looking back at what I was doing, what other people were telling me. It’s really evolved. At first, I can tell you, I loved and I sought out assessment. Now I resent and reluctantly use it and dismiss it. I really didn’t understand neurodiversity or assessment. Now that I do, I understand how things have gotten so confusing for individuals with labels, for the parents, the caregivers and the professionals, with hugely varying opinions.

In having children that are neurotypical and neurodiverse and whatever else we want to call them, I can tell you that the amount of specialists I have seen in my children’s 17 years and seven years of life is extensive. I have seen over 40 experts, at least, and I spend…. Probably weekly, I see appointments with experts. From doctors to complex teams to, you know, more paraprofessionals, I see a lot of them. Their identification, monitoring and referral for services ranges profoundly. It is horrible, and it is wonderful. I hate it because it’s so very hard to manage it. It’s such a horrifically complex system. I am a social worker with a master’s in special education, and it’s hard.

For my children, the tests range from blood tests to…. My one son gets exposed to 30 seconds of radiation. Sometimes it’s questionnaires. Sometimes it’s meeting with a team. Sometimes it’s beautiful people who listen and hear you, and sometimes it’s people who dismiss you. The range of options and opinions is mind-blowing. It’s very hard to manage.

So we can imagine that the challenges are big, right? The gaps and disjointment are unmanageable because the options don’t offer extensive, hands-on work-sharing and cooperative approaches. They don’t offer training with value and respect for the skills that parents develop. They are racked with conflict and confusion, and they usually place limits and parameters. They also come with relief, joy and amazement. I’ve had amazing things…. One of my favourites is supportive seating. Absolutely love it. It’s made a big difference in my son’s life.

Ultimately, parents bring their children and themselves to the care and mercy of doctors, therapists and helpers, hoping to lighten their load through understanding, support and hope. What they get from an assessment is the bell curve. The psychologist was talking about the labels and stuff. The idea of the bell curve is that there’s a certain number of people who are normal. That’s where this neurodiverse and neurotypical comes from.

The majority of people fall in the normal area. Those assessments are also norm-referenced, which means that they’ve tested a whole bunch of other people, they compare the scores, and we decide that there are people that are outside of that. If your child’s outside that, congratulations. You get the help. If your child isn’t, then that’s just normal parenting and you’re on your own. If you get a 71, your child’s just borderline, and you don’t get the diagnosis of moderately mentally handicapped. If you want the At Home program and your child’s only dependent in two areas, you get nothing. If you get three areas, congratulations. You get the At Home program.

It’s crazy-making, and parents are needing help. They’re asking for help, and that is a good thing. Who gets the help is really interesting. If you’re an educated parent who has money and skills, you can navigate the system, even though it’s very, very hard. If you’re low-income or struggle, many times those children are abandoned or abused, and they end up in care.

[9:50 a.m.]

Looking back through my life, I’ve been very fortunate, and I really appreciate government supports. I was in care, and I didn’t realize, looking back, that probably one-third to one-half of the kids I lived with were neurodiverse, and their parents had a very hard time managing them. I also worked in group homes, and I know that those kids struggled with those things. Looking back, I didn’t even have a clue that, really, they needed the special education and special needs support.

As a financial assistance worker, I saw so many tragic people who fell through the cracks, who were absolutely neurodiverse. So I was happy to go back and, hopefully, work in the schools to make a difference.

I think the other issue with neurodiversity or assessment is that we decide that all kids are the same. Well, my son has DS. I didn’t tell you guys about that. As I hope you guessed, it’s Down syndrome, the big popular one. They’re all different. I assumed my son didn’t have Down syndrome because he didn’t have one of the criteria. My son, who benefits from one service, is not going to be the same as another child who benefits from the service.

The supports we get. Actually, I think the provincial government offers a great deal of support for families. Technically, I should probably get about $60,000 because I have two sons with disabilities. However, I have a great deal of difficulty accessing that money, and a huge majority of it goes to experts. The previous fellow was saying: “Drop it down from a doctor to a psychologist.” Well, I say even more, where my funding goes to experts all the time.

Those experts are really great — some of them. But some of the systems block my ability to use who I want. The At Home program says I can only use an OT, an SLP, a PT. The SD program says I can go down to the level of a BI, a behaviour interventionist. The respite program. Ironically, I get the greatest service from my respite. I can pay her $113 for 24 hours, and it’s amazing. She includes my sons completely. She’s wonderful and loving, and her husband is all part of it. It’s not like a job. It’s like they just bring him in, too, as part of his life.

It’s amazing to think that there’s all this money that’s sent out, but it doesn’t really come to me. In particular, one of my frustrations is the transition from early intervention. I didn’t really get direct money. I had experts help me and advise me and teach me how to be a good parent. I’m a pretty good one, I think, by now. Then when I got into the public school system, it was like, that money was going to go to teachers, teacher experts, psychologists and all those professionals.

Sometimes, even within that situation, there are barriers that are created where I can’t even use the services. I have an outside agency therapist who can’t even see my son during the school day. I have to take time off work or arrange all my schedule to get my child to see somebody after school, when they’re exhausted and tired, because of collective agreements and unionized things. I don’t disagree with paying workers well, and I will use experts. But I don’t want to only use experts all the time, because parents have amazing skills and abilities, and we have been trained and taught by all these people.

I would like you to please stop focusing on eligibility and assessment, and please stop focusing on money for experts. Parents are their children’s experts. We don’t need $125 an hour to pay or to be used. We don’t need them necessarily to get $95,000 to $150,000 a year. That’s where a lot of our money goes — the respite and the BIs. Respite is $113 for 24 hours. A BI is $25. Now, there are some things you want to use high-level experts for, but parents even work for free. We do all this work. There are all these networks that we’ve created amongst each other to create connections, and they’re one of my favourite experts to go to.

I also would like you not to just assess eligibility. Just ask us what we need. Don’t use assessments to say that we don’t need help. That’s not what they were meant for. Invest in true parent training. See them as a person who actually is equivalent to an SLP, an EA, a health care aide or, at least, their assistants.

[9:55 a.m.]

Personally, I want to train as an alternative dispute resolution mediator, negotiator and arbitrator, because I feel that’s what’s needed. That’s the skill level I need to manage this. Get rid of too much expertise if it becomes a barrier. There are not enough experts. Unions block things. Schools actually use their assessments to combat outside agency assessments.

N. Simons (Chair): Thank you. If you want to continue, it’s okay. I was hoping for an opportunity for questions, and we’ll run out of time. If you’d like to continue, just to finish off here, go ahead.

M. Souter: I have two more points. I also feel that one of the challenges was in entering the school system. I feel the School Act needs to change. I think there needs to be a part of the School Act that says that parents should be equal in developing educational programs for children with special needs. Parents need to be given the ability to negotiate where this money goes, through parent advisory committees — paid positions — and cooperatives that are organized by district and region. Parents also need to have the ability to supervise what happens with those, because unfortunately, administrators, through their collective bargaining, have given up that right.

I know I could do more with the $57,000 to $60,000. I’d use some experts. I’d use respite. I’d negotiate with the school.

N. Simons (Chair): Very well said. Thank you very much, Mary. Laurie has a question for you.

L. Throness: All programs are given on the basis of eligibility criteria. There’s always sort of the notch person, who’s born on January 1, as opposed to December 31, who is eligible. How do you run a program if you don’t have eligibility criteria?

I appreciate what you say. All these assessments — you slice and dice kids. They have dozens of neurodiverse conditions, and really, they’re exhibiting a range of behaviours that are similar. And maybe a parent is better able to judge what kind of help they need. I like what you say, but my problem is with the eligibility. Without assessment, how do you determine eligibility? We can’t give money to everybody.

M. Souter: Well, I think you should have faith that parents aren’t going to ask for things they don’t need. People aren’t going to run up and try and get help for things if…. Parents are only asking for help that they really need.

It’s how well it’s used. There are all these resources. Especially, I get very frustrated in the public system. I’m in a beautiful school that’s trying to co-create and use parent resources. We volunteer. We give free stuff. We do all sorts of things. There’s community to be brought in. I’m really glad you guys are doing this community work, because there are community people that are willing to come in and help schools and help parents. I think that could happen if you have people who facilitate that.

N. Simons (Chair): Any other questions?

L. Throness: I have one follow-up. Eligibility criteria are made for those who would skirt the system, and there are always some who would. Most parents, yes, are absolutely as you say, but there are some who would use the system as well. That’s a problem called moral hazard, which is across the board in public policy.

M. Souter: It’s already happening.

L. Throness: How do we run a program, then, without eligibility criteria?

M. Souter: Well, I think having the faith that people will just ask for what they need. I really actually believe that. I am very much a social worker and stuff too, but I don’t see people running in and saying: “I need an occupational therapist” or “I need respite.” The other alternative is children abandoned, abused and in care, and that’s really what you want to prevent, because they really are overrepresented in the care system.

N. Simons (Chair): Thank you very much, Mary. Thank you for taking the time to give us your perspective. It all helps us with our deliberations. It’s food for our thoughts, and I appreciate it. Thank you very much.

Next on our list, and present in the gallery, is Cynthia Lockrey. I’d like to welcome Cynthia to the committee.

As she’s getting settled, I’ll just say that the lights on my desk are more than just pretty. They will indicate at eight minutes when you have two minutes left, by the green. The red will be what most people do when they get to the red light, but not everyone. It’s just signalled there.

Thank you very much for being here.

CYNTHIA LOCKREY

C. Lockrey: Thank you. I am Cynthia Lockrey. I live in the Cowichan Valley. I am a mother of two children, one with special needs. I’m also an author of a book on how to advo­cate for kids with special needs, and I do workshops to help parents advocate.

It’s the book I didn’t want to write. When my son was going through his diagnosis, I wished somebody had written a book. So being a former journalist, I had to do it.

[10:00 a.m.]

Through this work…. It’s not just me. I am out there meeting with families all the time. I wanted to come and talk to you and say that we have a brewing crisis in the province of B.C. Special needs children and the needs of children continue to take the back seat in funding.

I have presented, other people have presented, year after year at the budget hearings. We have thrown statistics. We have thrown research about what’s happening. The needs of children are growing, and the funding and resources are decreasing. Each year we get recommendations to the final budget that say: “Yes. We need to find more speech and language therapists. We need more EAs. We need more of this based on true data.” And when the final budget comes out, it’s either not there or it’s greatly watered down.

What are getting funded are seniors, affordable housing, drug crisis — all very important things but also things that get a lot of media attention. Children with special needs don’t get as much attention because parents are exhausted. Raising a child with special needs is a full-time job. We are tired. We don’t have time to write letters. We don’t have time to go to the media. We don’t have time to protest. A lot of the parents of kids with special needs are barely hanging on. There’s a crisis with families in the province, and they don’t even know what to do.

I continue to see the funding eroded. We’ve got the new prevalence funding model being looked at in B.C. I think whenever we take samples from Ontario, it’s not really the best province to be emulating. I’m from Ontario, so I can say that. Right now, my son…. It took a long time to get all the labels, all the diagnosis, all the assessments. But with that came an EA. The prevalence funding model, putting it in a big pot of money…. There’s no guarantee that my child and his needs are going to be met.

Right now we know that our kids are the ones that the budget cuts come at. I found out on Friday that our school is losing a full-time EA for September, not because of lack of designations — we actually have more kids with designations in September — but because the school district has a budget shortfall. Where are we going to save that money? We’re going to cut a full EA out of a school. So you will hear me advocating pretty loudly, because now it’s going to impact my kid as well.

I was at the school on Friday, at the fun fair. A mother came up to me and said: “I hear you do advocacy work. It took my son three years to get an IEP. This is the first year that he’s had any support that he needs in school, and now, with the prevalence funding model, I’m terrified that he’s going to lose that support.”

I’m seeing that families are at the breaking point right now. Every time I do workshops or speak on advocacy, it ends up with a tear fest. I hear stories that are horrendous and that shouldn’t be happening. There are parents, like me, who are front and centre — parents like Mary. We will advocate. Our kids are getting some support because we’re there. Where I feel my heart break is kids with greater needs than my child who get no support because their parents aren’t there advocating.

Also the kids with the lesser-known conditions. There are some labels that come with some pretty good, solid funding. Then there are these kids that fall through the cracks because they’ve got ADHD or they’ve got a genetic condition or they’ve got a speech delay, and all these things put together…. It’s hard to actually get the designation.

When we don’t support kids with special needs…. We are going to have a mental health crisis. I see it coming.

My son, for example, in kindergarten had a severe speech delay. There were no speech therapists in the valley who were accepting school-age kids. Overwhelmed speech therapist in the school. So his whole kindergarten, he did not speak. He knew how to speak, but he knew nobody understood him. He had no friends. He did not socialize. He did not take part in school. We managed to finally find a private therapist at the cost of thousands and thousands of dollars to my husband and me. After three months of intensive therapy, he made friends. He participated. His teacher said: “Oh, I didn’t know he was so bright.” They had labelled him as being not intelligent, although he was, because he couldn’t speak.

[10:05 a.m.]

When we’re not supporting kids with special needs, it leads to bullying. It leads to isolation. It leads to mental illness. It leads to substance abuse. It leads to underemployment.

The prevalence funding model, I think, needs more pause than just jumping in. The teachers union has said they’re opposed to it. Parents have said they’re opposed to it. I also feel that we need to look really closely at what’s happening. I would love the B.C. government to make 2020 the year that special needs funding and the needs of children with disabilities get attention and get the proper attention they need. These are your vulnerable ones.

I would love to see more EAs, not less. I would love not to cut EAs just because there’s a budget shortfall elsewhere in the district. I would also love to see shorter wait times for assessment. It can take a long, long time to get assessments, and the kids that aren’t getting it….

My husband had to quit a full-time job when my son was four because we had to come to Victoria — it seemed like every week — for another specialist, another assessment. We had therapy, and it took a full calendar year to get the diagnosis we needed, to get the EA support in school.

Well, guess what. A lot of parents can’t quit a full-time job to run around and do that. So I would like to see more access to respite care. I’d like to see telehealth. I’ve spoken with the telehealth team about ways of preventing all that driving, especially for rural parts of the province, decreasing wait list, but most importantly, listen to what’s being said over the next while with your statistics and look that…. I know we need 400 speech-language therapists just to meet the basic needs of kids before they even enter the school system. Forget about once they’re in the system.

In our district, kids only get speech-language therapy in the primary grades. There is no speech therapist in the whole Cowichan who will accept a school-age child right now. This is what’s happening on the ground, and the assistance that you give kids like mine will help the neurotypical kids — less meltdowns in the classroom and more support.

I am open to questions.

N. Simons (Chair): Well, thank you very much. I really appreciate you taking the time to give us your insight. I know my colleagues on the committee have questions. I know Laurie does.

Go ahead, Laurie.

L. Throness: Excuse my ignorance. I should know this. What is the prevalence funding model? I don’t know.

C. Lockrey: The funding right now in B.C. is also…. Right now my kid has a designation and a label, and he gets funding for X amount of hours of EA support. The new model is saying: “Let’s pool all the money based on statistics.” So statistically-wise in the Cowichan Valley, there’s X amount of kids who have special needs. Statistically, let’s give the school district that money and let them figure out how to allocate it versus it being tied to a child.

The challenge is, right now, to get my kid anything, I have to go through a lot of jumping to get the diagnosis. But then at least I know what my kid’s diagnosis is. With the new funding model, it’s going to be statistical versus my child. So there’s going to be less pressure on parents to get their kid assessed and diagnosed, which will actually result in the statistics going down but the reality…. It won’t measure what the true numbers are.

L. Throness: There must be some rationale for the prevalence funding model, some kind of positive benefit that its proponents would point to. What would be that benefit?

C. Lockrey: Administration costs. Right now I know our school district had two months of the year that all they did was audit every single child in the Cowichan Valley who had funding to make sure that they weren’t lying and that it wasn’t a scam, which is impossible — to try to scam the system. And there are a lot of administration costs.

They’re saying that the administration costs that will be saved will equal…. But I’m saying as a parent of a kid with special needs…. And my child shares his EA with a child with autism who has severe behavioural issues. Because of that, I’m already trying to advocate, “Don’t forget my kid who has no behavioural issues, who’s quiet.”

[10:10 a.m.]

This is where the prevalence funding model…. It’s less onus on people to figure out the diagnosis, which I think is actually really important, because now I know what support my child needs based on his diagnosis.

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

Rachna, you’re there, but no questions.

You expressed yourself very succinctly, and we really appreciate it. Just so you know, it’s still important to give testimony to the Finance Committee. The government makes decisions. They have priorities. We hope that by going out and talking to people about this subject specifically, we can raise awareness about where the problems have been for, maybe, a considerable amount of time and what we need to do to address them. So your testimony today has been very helpful. Thank you very much.

C. Lockrey: Great. I will sign up for the Finance Committee again.

N. Simons (Chair): Thank you. I’ll be there.

C. Lockrey: Oh, perfect. Thank you.

N. Simons (Chair): Let’s welcome to the table Jocelyn Stanton, who is next on our list. We welcome Jocelyn to the committee.

Just to go over the lights, the light will turn green when you have two minutes left out of your ten. Then we’ll have five minutes for questions. Thank you very much, and welcome. You have the floor.

JOCELYN STANTON

J. Stanton: Good morning. Thank you to this committee for the opportunity to present on the very important topic of assessment and eligibility for neurodiverse children. My name is Jocelyn Stanton, and I’m here today as the proud parent of two children, ages seven and nine years old, both of whom have gone through the Vancouver Island assessment network, which I’ll refer to as VICAN throughout my comments today and which is the process available at Queen Alexandra here in Victoria.

My younger child was diagnosed with autism spectrum disorder in 2017, when he was five years old. My comments today focus on our family’s experience through the autism process and supports. My child is considered high functioning, so the supports he requires relate to his social, emotional and sensory challenges.

I would also like to add that with me today are two people who played a vital role supporting my younger child before and after his diagnosis. Mr. Ricky De Souza is the principal at St. Christopher’s Montessori School here in Victoria, which is where both of my children attended school. Ms. Angie Scandale was my child’s support teacher at St. Christopher’s. I’m grateful to both of them as well as all the teachers there in the school’s community, because we always felt very supported.

In my comments today, I will also be including ideas on how to address some of the gaps we saw in the eligibility and assessment system. I’ve included these recommendations in the handout that I’ve provided to this committee. I apologize in advance if I get some terminology wrong. I am not a service provider or an educational expert.

To be clear, I am not critical of the assessment or education system or any professionals within it. In fact, everyone we encountered was kind and compassionate, and I’m very grateful to everyone on our journey. I’m guessing that the assessment system was created at a time when there wasn’t as much known about autism or other types of neurodiversity. I’m assuming the intake levels back then were not what they are today.

I also think it’s impossible to talk about the assessment process without talking about the education system. Our assessment experiences are interwoven with our child’s schooling experience. We felt the system was like a puzzle, where families are required to navigate it without any real guidance or information. Even the professionals within the system are not always aware of the roles and responsibilities of other professionals involved.

There is also a lack of understanding of how diverse autism is and the many ways it can present, although I do believe that perception is changing, thankfully. For example, our GP at the time did not believe me when I said our child needed a referral to a pediatrician for autism, although she knew we had already engaged with the early intervention program at Queen Alexandra. She believed he was gifted and not autistic.

Later our GP would tell me I needed to be referred to a pediatrician who specialized in autism, and this specialist had a year-long wait. Much later, I would learn that having a pediatrician with an autism specialty wasn’t required for a referral to the VICAN for a diagnosis.

[10:15 a.m.]

When my older child was assessed last year, although she faced the same long assessment wait, which was about one year, for some reason, she did not go through any assessments by an occupational therapist or a speech language pathologist like our younger child did. She was referred by our pediatrician and assessed by a child psychiatrist in one two-hour appointment. To this day, I still don’t know why my children went through two different assessment processes.

This brings me to my first two recommendations, which I’ve outlined in my handout.

Number 1: triage cases through an early childhood neurodiverse and mental health screening, which would be offered as part of the routine childhood public health checkups done in early childhood between 18 months and three years old.

Perhaps the triaging would be conducted by a public health nurse or trained intake staff person talking with parents. Then the public health staff would either put the parents in contact with the right community organization or submit the results to either the family’s GP or their pediatrician for further assessments or referrals, depending on the results. That way, the parents can make an informed decision early in the child’s life.

I believe this triaging process would also improve awareness and education for new parents, as well as reduce the stigma of neurodiversity and mental health overall. Many parents don’t know what to look for and then learn late in their child’s development that there is a misdiagnosis, which translates into late interventions and poorer outcomes.

Number 2: ensure consistency in how assessments are done, no matter where the family lives in the province or what age the child is.

My children had two different processes, and that was in a time span of about two years apart. Further, I often think about how lucky we are because of the community we live in. I can’t imagine how challenging this process would have been if we lived in either a rural or remote community.

To loop back to my story, as I mentioned earlier, both our children attended St. Christopher’s Montessori. This school teaches children ages three to six years old, with two years of preschool and one year of kindergarten. As every parent knows, children do not come with a manual. Neither my husband nor I were experts in early childhood development, so we simply didn’t know what to look for when it came to neurodiversity. With autism, all we knew was that autistic children would not speak or make eye contact, which was not the case with either of our children.

When my youngest child went to preschool at the age of three, we were lucky that the school immediately noticed that our child needed additional support and put a support teacher in place, without any cost to us. I know how fortunate we were to have this additional one-on-one support, because this teacher got to know our child very well and could really engage him to meet his needs.

It was at that time that the principal recommended we seek further information through Queen Alexandra here in Victoria. I contacted Queen Alexandra in early 2016 and was put in touch with the early intervention program staff. All the staff there were very kind and compassionate, and it was clear they had a heavy caseload.

Our first case manager observed my child at school about three times over the spring, believed my child had anxiety and put him on the assessment wait-list. I wasn’t told I should find a pediatrician or really anything else beyond being given a lot of reading about helping children with anxiety. It was only later that I learned this case manager was not trained in autism or even aware of what to look for.

This brings me to my third recommendation. Educate all front-line staff about the assessment process, including case managers, social workers, teachers, early childhood educators and health professionals, working with already triaged children before their assessment and ensuring these professionals are aware of the process itself and neurodiversity. This education can either be included in their training or education at post-secondary institutions or through their respective professional regulators through annual continuing education.

I noted in Hansard, with other presenters to this committee, about the idea of a family navigator. I also think that would be helpful for families, both before and after an assessment.

Back to our journey. Over the summer of 2016, our file was transferred to a second case manager at Queen Alexandra. I initiated contact with this new person when my child started his second year of preschool in September. Had I not been proactive and initiated contact, I’m not sure when I would have been contacted.

At my request, the case manager observed my child at school and then engaged an occupational therapist and a speech-language pathologist to observe my child and assess him too. It was at this point that I started realizing maybe there was more going on than anxiety and that it could possibly be autism. I was told I should find a pediatrician as soon as possible because a diagnosis required a team of specialists. As I mentioned earlier, our GP didn’t believe that my child required a referral, and the first referral we had was to a pediatrician with a wait of over one year.

[10:20 a.m.]

I’m eternally grateful to a group of moms I know. Through this group, I heard of another pediatrician who had a shorter wait-list but was not a specialist in autism. As I mentioned, I later learned that having a specialization in autism was not required for a pediatrician’s referral to VICAN.

Finally, in June 2017, 16 months after I first contacted Queen Alexandra, our child was diagnosed. As soon as he was diagnosed, I was given lots of information and met with two different social workers, who showed me the registry for autism service providers, known as RASP, list. I was told I needed to choose a service provider on this list, which was pre-approved by the Ministry of Children and Families. I was also told that when our child turned six, his funding would drop from $22,000 to $6,000 per year for these services.

I made sure that before his sixth birthday, we would spend every funding dollar we received on services and supports for him, knowing that this would be our only time to do it. We crammed in a lot of therapy over the fall of 2017, and it really helped my child. Even his teachers noticed a marked improvement in his behaviour. At this point, I had already taken leave from work. So I was in a very fortunate situation to be able to drive our child to and from kindergarten and therapy daily while conferring with his therapists and support teacher so that we were all on the same page at school, at therapy and at home. This brings me to my fourth and fifth recommendations.

Four, extend the age cutoff for funding to 12 years old, or when the child completes grade 5 and ends the elementary school years. At 12 midnight, the night a child turns six, they are not magically cured the next morning. For my child, who has a January birthday, this is even more crucial, because he still had half a year left of kindergarten but with fewer services to help him. This essentially shifted the therapy over to his support teacher. We all know that early intervention is vital. So why not extend funding for therapies throughout the elementary school years? Currently schools don’t get funding while the child is in kindergarten. Having children get the services that they need will help improve behaviours in the classroom.

Five, some families who have neurodiverse children will have one parent step away from their career to support their children. Why not support families who have children with neurodiversity through tax credits or some other savings for activities and equipment for their diagnosed children, regardless of the diagnosis? Also, push the federal government to move ahead with the disability tax credit, DTC, for families who have a child with a diagnosis. To my understanding, that approval process is confusing and inconsistently applied.

Finally, I want to talk about the education system.

N. Simons (Chair): I probably forgot to tell you that the red meant that you were out of time. If you’d like to continue, we’ll just take that out of our questioning time.

J. Stanton: Sure. I’ll be quick.

Undiagnosed neurodiverse children in the school system can create a significant behavioural and resource issues in the classroom. If the parents are unaware, have other issues going on in their lives or are undiagnosed themselves, they may not get their child assessed. This can leave a challenging situation for teachers and educational assistants attempting to balance the needs of both diagnosed and undiagnosed children.

This is a quote from the “How funding works” page under the “Autism funding” page on the B.C. government website: “Once children with autism start school, they benefit from the education programs and services that are available through the school system.” Then later on the page: “It is important to note that supplemental funds are not targeted to individual students.”

In other words, funding is given to the schools for the benefit of the autistic child, but there is no guarantee that it will go to support that very same child who needs it. In effect, the school system becomes a service provider but with no accountability to the specific child with the diagnosis or to the taxpayer who is funding those services that are supposed to be delivered to that child. This leads me to my sixth and seventh recommendations.

Six, create a regulator in B.C. for anyone who is working with special needs children, including all service providers, ECEs and EAs. I actually think anyone working with a vulnerable population should be regulated, but that is for another day. I understand that service providers that are on the RASP list, distinct from the ones that are not on the list and thus, to my understanding, not approved by MCFD, are regulated through an American certification process. Our health and education systems are completely different than in the U.S. So it seems only logical to establish a B.C. credentialing body here, similar to how teachers or other professions are regulated.

Neurodiverse children are twice vulnerable, and the fact that EAs are not regulated nor require any training at all, let alone in applied behaviour analysis or some other therapeutic intervention, appears to be a significant gap. Regulation of a profession requires ongoing continuing education and quality assurance, establishing a regulator for EAs would mean that children would be receiving support based on best practices, and there would be greater transparency and accountability to the parents and the taxpaying public in general.

[10:25 a.m.]

My final recommendation, No. 7: include some sort of behavioural intervention training, such as ABA, for teachers as part of their bachelor of education degree program. When a new teacher graduates, they would earn both a bachelor’s degree and a special needs certification.

If the school system is trying to support inclusivity in the classroom, teachers need tools and techniques to support both the diagnosed and undiagnosed children they teach. I believe having additional training for special needs, along with regulated EAs, would make for a better classroom environment, reduce burnout for teaching professionals and improve student outcomes.

In conclusion, my recommendations are given with the goal of creating a more consistent and accountable system to meet the changing needs of the children it serves. As science uncovers more and more about how the brain develops in childhood, including neurological disorders, I’m guessing there will be an increasing amount of diagnoses, including autism, and that will only continue to overwhelm the existing system if it doesn’t change.

I believe in creating a child-centred system that continues to adapt to the changing needs of the children it serves to improve outcomes for neurodiverse children, reduce stigmas that exist around neurodiversity and mental health and, ultimately, help to create a healthier society. Thank you very much.

N. Simons (Chair): Thank you very much, Jocelyn. We appreciate your time and your willingness to give us some testimony, and it will be considered as we deliberate. So thank you very much for coming.

We are going to take a minute to set up a conference call. Our next witness will be coming up over the phone. So the committee stands in recess.

The committee recessed from 10:26 a.m. to 10:36 a.m.

[N. Simons in the chair.]

N. Simons (Chair): Thank you, committee members. We are back, contemplating our special project. We have, on the phone, Scott Howe from the B.C. Special Olympics.

We’re really pleased to have you here. You have the floor.

SPECIAL OLYMPICS B.C.

S. Howe: Thank you for taking the time to listen to my presentation. Just in case anybody is not super familiar, I’ll start with a brief overview of what Special Olympics is, and then I’ll transition into our champions for inclusive health initiative and our feedback on the assessments process.

N. Simons (Chair): Okay, Scott. I’ll give you a warning when you have two minutes left.

S. Howe: Okay. Sounds good.

Special Olympics — worldwide we just had our 50th anniversary. Here in B.C., we’ve been going since about 1980. What we do is provide the opportunity to engage in sports to people of all ages with an intellectual disability.

We define an intellectual disability as somebody with an IQ of 75 or lower and significant impairments to two or more adaptive areas. But that being said, we don’t do testing. If you are somebody who identifies as somebody with an intellectual disability, we’re more than happy to welcome you into our program.

Our youngest athletes here in B.C. are two years old, and our oldest are 91. We really try and keep people engaged all throughout their lifespan. We have about 4,600 athletes around the province competing in 55 different communities. They’re supported by 4,000 volunteers.

For these athletes, most of what goes on is kind of what takes place at the community level. But those who want to take it to the next level can go and participate in our regional, provincial, national and even the World Games. Our recent summer games just took place in Abu Dhabi.

In terms of health care, a little while ago, we were ap­proached by our international office. We were given a grant to run what’s called a healthy athletes screening, which is basically where anybody with an intellectual disability can come and visit a range of different, specially trained health practitioners, ranging from optometrists to podiatrists, who are just a bit more comfortable working with the population.

We initially had kind of said: “There are a lot of countries that have Special Olympics programs. We come from B.C., where we have a good health care system and free health care. Maybe there’s another region that this could be better spent on.” They kind of said: “Just humour us. Do these screenings, and report back to us.”

So we did. It turns out that the results that we were getting were comparable to the results that Special Olympics got in some of the poorest countries in the world. In some cases, the results that we were getting were even worse.

[10:40 a.m.]

For example, in terms of obesity, children in B.C. were about 15 percent higher than the global average for children with intellectual disabilities at these Special Olympics screenings. We took a big step back, because that kind of shocked us. We went out and did as much research as we possibly could into the health outcomes faced by people with intellectual disabilities. What we found was quite shocking.

Just to give a very brief overview of some of the things we found, about half of all individuals with intellectual disabilities are on multiple medications concurrently, with about 20 percent being on five or more at any one given time. A woman with an intellectual disability will expect to experience sexual violence at a rate seven times that of the general population. People are more likely to have a severe mental health disorder, far more likely to respond negatively to mainstream treatments, more likely to be obese, more likely to eat less-nutritious diets. It goes pretty much across the entire spectrum of health and well-being for the population.

When you take all of those individual health disparities and you put them together, it means that a child born today, in British Columbia, with an intellectual disability can expect to die a full 20 years sooner than a typically developing child.

It really has nothing to do with the intellectual disability itself, with the exception of a few narrow cases. It largely has to do with social exclusion and the fact that people with intellectual disabilities aren’t generally welcomed to the same extent, in their community, as a typically developing child would. A lack of physical activity would be No. 2, No. 3 would be poor diet, and No. 4 would be lack of access to health services.

Special Olympics has kind of realized that this is too big of an issue to take on, on our own. So two years ago, we held the first of what was called our Champions for Inclusive Health Stakeholder Coalition meeting. At that meeting, we just brought together everybody that we could think of that could potentially play a role in eliminating these health disparities faced by the population. That ranged from practitioners and self-advocates at NGOs, school boards, parks and rec, ministry representatives.

We all just got in the room and started talking about what reform would look like. We followed that up again this past fall with a second meeting, but this time we asked everybody who was interested to commit to collaborating and working together to try and solve these issues. In January, we held another meeting, where representatives from several dozen different stakeholder groups all came together and agreed to form the official Champions for Inclusive Health Stakeholder Coalition.

Over the next month, we have six different working groups that have been established, and these working groups are all going to start meeting and trying to share resources between the different stakeholders and encourage collective action to try and eliminate health disparities.

For example, we have a measurement working group, and that working group is all focused on data collection and trying to figure out what exactly the current health outcomes in B.C. are and creating a measurable set of indicators for the coalition as we progress in our work. Another would be the professional education and support group, which is all about increasing access to not just health services but weight room services and public recreation services to try and make sure that people with intellectual disabilities have access to the services they need. That’s, generally, the Champions for Inclusive Health Stakeholder Coalition.

When we found out that there was the opportunity to make these presentations to the board, I went around and asked a lot of the different self-advocates who are involved in the coalition, as well as some of the parents and caregivers that we know through Special Olympics and just got their feedback for what the assessment period is. I found a few very common themes that a lot of people mentioned.

The biggest one is that there’s a pretty big discrepancy in the services available to a child with autism compared to a child with most other intellectual disabilities. I frequently heard from parents that they are spending out of pocket to get a second assessment and that, even, it’s not uncommon for some parents to try and push the assessment to get a specific diagnosis of autism, simply for the supports and the additional supports.

One mother I talked to had said: “Yes, my child has Down syndrome, but I’m not worried about a second label. She already has one label that’s going to cause her to be stigmatized. If I can get her a diagnosis of autism, that’s going to vastly increase her chances of success later in life.”

[10:45 a.m.]

Having that second label is something that parents are really interested in. At least as far as we’re aware, there’s no scientific evidence to show that supports of that nature given to a child with autism are significantly more effective than if they had been given to a child with, say, for example, Down syndrome.

The result of those differences, especially before the age of six, seems to almost divide the disability community. It creates a lot of tension between parents of children with autism and parents of children without.

That would be our primary recommendation. From there, the most common thing that I heard was that the length of time needed to get an assessment was often too long. By the time parents were able to get the assessment and then access the necessary treatment, they had already missed a pretty significant amount of time that could have been devoted to early intervention, which has shown to be quite effective for the population.

N. Simons (Chair): Okay, Scott. You’ve got one minute left.

S. Howe: Perfect. The last thing that I would add is that…. Sorry, two things. One, at the age of six, many parents state that there are no longer sufficient supports available in the school system but that their funding gets cut off, with the idea they will be able to access these services from the school system, which has been quite a point of contention.

Very quickly, I have heard some parents say that, initially, in the very first assessments, they’re quite hesitant. They want to be able to say what their child can do as opposed to what their child can’t do. The result is that they almost say that their child can do too much in terms of the assessment, so they get assessed as being a higher level of functioning than they actually are.

It comes down to their parents’ belief that they don’t want that stigma associated with their child. There were some suggestions that that needs to be explained a little bit better to parents and caregivers while they’re going through the assessments process.

I will stop there.

N. Simons (Chair): That’s very insightful and much appreciated. Your perspective is unique. We haven’t heard from anyone from Special Olympics. As MLAs, we’re always pleased when we see that we can offer support to the organization. Thank you.

Members of committee, are there any questions that pop to mind at this point? No?

Scott, I appreciate your time and your willingness to provide your perspective. We’re going to be looking through the transcripts to try to summarize what we’ve heard, and what you’ve added has been a unique perspective that we appreciate.

S. Howe: Thank you. If any member of the committee would be interested in speaking with me further, at another chance, I’d be very open to that conversation.

N. Simons (Chair): Thank you very much for the offer.

Okay, committee members. We have, next on our list of testimonials, Catherine Nash.

Catherine, welcome to the table. I’ve been saying welcome to the witness stand, but that’s not quite right. It’s a little intimidating as it is…

C. Nash: It would be a little intimidating.

N. Simons (Chair): …because we’re far away here. Thanks very much for coming today, and we look forward to hearing what you have to tell us.

CATHERINE NASH

C. Nash: Thank you for looking at this issue of eligibility and assessment. I’m going to try to stick to it.

I thought I should start with my perspective and where I come from. I am the PAC president of Victor School, which is a school that exists here in Victoria, for which I am utterly grateful. It is where about 16 of the city’s most vulnerable and severely disabled children learn together. They’re supported by amazing professionals, teachers and assistants. It’s in a community that, I think, expands the definition of inclusion, and it includes and celebrates the lived realities and the incredible diversity of the children who attend that school.

I can’t speak to the very unique stories of every parent at Victor School, but I will tell you that my perspective is as the mother of a now 15-year-old son, Darwyn Danesh. He has Down syndrome, and he also has autism.

Thank you, Scott, for the lead-in.

He has also had three open-heart surgeries, and we have come to accept what the doctors say, which is that he is not a candidate for any further surgeries for health reasons.

[10:50 a.m.]

That is a very brief summary of our last 15 years. I think I bring to you the perspective of the very tired and somewhat exhausted parents of kids with severe disabilities and also that sense of urgency that we all feel and the frustration that sometimes comes when systems that move more slowly don’t feel as urgent as we do about how long things might take or how changes need to be made before your child goes through another six months of waiting for something.

With that sense of urgency at the top of the list here, I would like to talk about the two wait-lists that my son has been on, on behalf of all the other kids, I guess, and families who have been on those wait-lists. The first wait-list is the autism assessment wait-list. I’m assuming you’ve heard a little bit about this already and will hear more about it. I won’t go into details. Suffice it to say, we were very lucky that our son attended Berwick Preschool in Vancouver, which has an incredible store of knowledge. Many children with special needs used to go and gather there. So the professionals who work there have learned from each other.

From the day it was suggested he might have autism, when he was four years old, his assistants at nursery school immediately took that in stride and said: “Oh, we’ll try things that work with kids who have autism.” They had only seen him as a child with Down syndrome before, who was quite different from other kids with Down syndrome. For the entire year that we waited for our assessment, he received services that most kids don’t. I think the reason for that is that we’re the type of parents who advocate for and get services for our child and have the economic ability, the luck of having the privilege of an education, and the time we need to spend to do this.

I’d like to say the autism wait-list so unfairly hinders parents with low economic or low advocacy skills to get what their children need. Those are children who are already starting and need a leg up. If there’s anything that could be done to reduce that wait-list…. This is not a new idea. I’d like to say all my ideas come from a new Representative for Children and Youth report. I do admit I was on the multidisciplinary team. I think they needed a tired mom to round out their decision-making and ideas.

The other wait-list that I think is really important, and sometimes not thought about or seen, is the At Home program. I don’t know if you all know about that. I’m sure you probably do. This is for kids with severe disabilities — not just kids with autism, not just kids with FASD, not just kids with Down syndrome. You usually have to have one or two of those, as well as some physical challenges, in order to be on this wait-list.

It is a pretty rare group of kids. I’m guessing every kid at Victor School is on it. In the whole of the province, I’m not sure how many kids — I think maybe around 3,000 or so, not so many — are in the At Home program. You get assessed for this by a social worker.

You’re assessed. You’re in the program. You’re told you should receive all of it. Your kid needs all of it. Then you’re put on a wait-list for respite that, I think, is one to two years long. I can’t remember. By the time I got the phone call, I’d forgotten Not quite forgotten, but I’d given up, actually, which is the better term.

You get the medical benefits immediately, which include diapers and some funding for speech, occupational or physical therapy, not quite enough to cover what an hour of a therapist actually costs. Again, those who have enough money to pay that little bit extra tend to get the therapists more than those who don’t. I think that’s a little disparity that could be looked at.

The wait-list for respite seems to be hugely unnecessary. You don’t have to get another doctor’s appointment. There’s nothing else you have to do. You’re just waiting. I have to say, I think what you’re waiting for is either children to age out of the program at age 19 or children who get funding to die. That seems horrifically unfair to the kids who are told: “You need this. Your parents need this, but it’s just not there yet.”

I think it would be a very simple thing to resolve quickly. I’m guessing one time of getting rid of the wait-list might remove it forever, because you will have children who age out, and you will have children who die in this program. Then the children that come in, if you have a certain amount, it will work. Those two wait-lists are what I’d like to talk about for eligibility and assessment.

[10:55 a.m.]

The other thing, if I just have a little more time, is another recommendation on here that I think is vital, and that is that MCFD, the Ministry of Health and the Ministry of Education need to work together more. I know the parents of all the kids at Victor School. These three ministries are a blur to us, as to which program comes from where and why you’re seeing a psychologist from one to get into CLBC but a psychologist from another for something else.

There needs to be leadership shown at the highest levels. These ministries can talk to each other, don’t have to worry about privacy issues — this may be getting a little far off — where, say, a child in MCFD is known to have some mental health challenges and needs support, but the Ministry of Education is not told. Or the Ministry of Education knows about something that’s happened, the Ministry of Children and Family Development doesn’t know, and then the Ministry of Health doesn’t know when that child ends up in emergency.

These are kids that need a wraparound type of care from all three ministries. I don’t know how you do that, but I’m hoping someone else can figure that out.

N. Simons (Chair): Thank you very much, Catherine. That was well said. You said it very well — that the wait that we call a wait-list is different when a parent hears it and when a service provider says it or when we hear about it. Thank you for that personal perspective.

Laurie, do you have a question?

L. Throness: Just a question about waiting lists for the At Home program.

You said that there’s a waiting list of a year, but there’s no reason for it. Do you get money to buy respite care? Or are the respite workers not available? Is it an administrative problem in the ministry? What do you think is the reason for the wait-list? I don’t believe that people want children to die….

C. Nash: I don’t believe that either. I’m just saying it seems to be that the only way one moves up the list is children age out or the list…. I’m sorry if that was, perhaps, over a bit. There is a certain truth to it within that demographic of children. That’s perhaps why.

My understanding is that there is a certain amount of funds allocated. There should be no administrative reason. Currently when I get respite funding…. I go in once a year and meet with the social worker. I then keep receipts and get things signed from my respite workers — I find my own respite workers — and I receive a cheque that reimburses me for some of that respite care that we use.

To me, there’s no other box that needs to be ticked off by a professional. You’re just on a list waiting. That’s why with the At Home program, in particular, because these children…. You don’t get in unless you are unable to toilet, feed, dress and…. There’s a fourth one. I can’t remember what it is. For the children waiting for that, the respite is something that is incredibly valuable, especially for parents who would not otherwise be able to afford it.

N. Simons (Chair): As it stands, I suppose, the amount received for respite is, once again, almost enough to maybe cover what’s necessary.

C. Nash: The amount received is…. I mean, we use it up every year, certainly, and then we pay for more on our own. It is often very parent-organized, so how much you pay your respite worker per hour in order to keep that person, and so on, is individualized.

Also, I understand, for some parents, respite is organized as another…. Staffed respite resources are also vitally important. I know there’s only one for children between here and Sooke and Esquimalt, and that is hard too. That’s another type of respite.

N. Simons (Chair): That’s good to know. Absolutely.

L. Throness: That’s very informative. Thank you.

N. Simons (Chair): Thank you very much, Catherine. Thanks for coming.

Committee members and those following along, we are moving on to our next presenters, who are Adrianne Wicks and Sierra Irving.

Welcome to the committee. Thanks for coming. Just so you know, I have a little light on the desk that goes green when you have two minutes left, and then it’s red when it’s time for questions. It’s nice of you to be here.

ADRIANNE WICKS, SIERRA IRVING

A. Wicks: This is kind of brief. I went by the guiding questions. My daughter and I wrote this up. I’ve had a really sore throat and chest cold, so she’s going to just read the brief overview from the guiding questions about our interaction with MCFD.

N. Simons (Chair): Well, thank you very much. You can go right ahead when you’re ready.

[11:00 a.m.]

S. Irving: Hi, I’m Sierra. I’m the daughter of Adrianne Wicks. I’ll be speaking on her behalf, but she will be open to questions at the end. This will be loosely based off the questions.

I am the sister of a 30-year-old with Asperger’s, and I have a 16-year-old sister who has autism and a seizure disorder. I’m going to tell you briefly about my family’s interaction with the child and youth special needs worker and MCFD.

My brother did not get a diagnosis until he was about 20 years old, even though it was obvious to anyone that he had some sort of a different ability. When my brother was in grade 8, he was failing all his classes, so he was given an IQ test that came back and said he had a university-level IQ. From then on, no services were given to him.

For my sister, it was different. She was diagnosed at two, mainly because my mom refused to let what happened to my brother happen to her. It has been 13 years since my sister was diagnosed, and in that time, my family has received zero assistance from MCFD. After my sister was diagnosed by QA in 2005, a CYSN worker met with my mom but told her nothing was available for my sister and that she would be put on a wait-list.

Our next contact would be five years later, when my mom contacted the CYSN worker in 2010 because my sister was going through a difficult time. She was abused at school, and not only would her CYSN worker not investigate the abuse, they told my mom that she would only receive services for her if she signed a paper saying that she may harm her.

When my mom refused, they stated that they could help if she would say that Savannah was dangerous. She refused to do that too. My mom was a single parent who was going to school during the day and working at night, and MCFD would not even allow her to have one hour of respite or any other services for my sister, even though they knew she also had an adult son that needed care too.

My mom went back to school because she knew the only way my siblings would have a chance at a life was for her to do it. We did not have contact with the CYSN worker until nine years later, when she called, offering to see what services Savannah needed. She wanted to meet and help my mom out. Unfortunately, it was a trick. She merely wanted my mom to sign the papers to send Savannah’s file to CLBC, even though Savannah could not even access anything for three years and she would be put back on the wait-list for services.

When my mom stated that she had been on a wait-list for 13 years, they said they would only give her temporary respite. Three months later, a different CYSN worker called, asking my mom to come in and sign papers and offering her a further six months of respite.

The only good that came out of it was that this worker had read about my brother and stated that when she sent Savannah’s file to CLBC, she would send a referral for his. By the time CLBC gets my brother’s file, he will be 33 years old, but we don’t believe he will get services because of his high IQ. We also expect that the respite will end in September too.

Kids with different abilities and their families aren’t receiving the supports they need in any areas of life. It is crucial during their early years to get assistance because they are transferring into school. However, there is an assumption that they will get supports in school, which is false. In the end, they just get a certificate of completion, which doesn’t allow them to go to post-secondary. If they aren’t educated, they can’t work. If they can’t work, they can’t support themselves, because they don’t know how.

When they move on to CLBC, services are limited, so you put in the lack of services early on. No education, so they have no chance of going to post-secondary. There’s no opportunity for meaningful employment, so they are forced on to welfare, which doesn’t even provide a livable wage. They end up possibly homeless or on the street, which begins a man-made cycle of poverty. We have to stop denying services on whatever perception we have of a child. It should be about the best interests of the child. If a child needs a service, they should get it. There should be no wait-list for anything. Time is of the essence.

If we help them now, by the time they get to adulthood, their potential will have increased along with their education and skills, and they could become productive members of society. If we don’t give services to them when they are young, then they move into the cycle of poverty.

Lastly, I would like to add that we need to end the marginalization of people with different abilities and allow them to reach their fullest potential.

N. Simons (Chair): That was really well done. That was hard to listen to, because it’s just so poignant and to the point. Well done.

[11:05 a.m.]

R. Leonard: Yeah, I just want to also congratulate you for coming here today and sharing your story. It sounds like you guys have had a tough row to hoe over a lot of years, and you’re still together and supporting each other, and that’s a wonderful thing.

You’ve definitely raised some real challenges with our system in terms of being able to navigate it successfully and to find the services that you need and really demonstrating the unique challenges that every person has coming into a system that is a little bit more regimented. I’m hopeful that we will come up with some recommendations that will make life a little easier for others along the way and that perhaps, along the way, it’ll be helpful to you as well. Thank you.

N. Simons (Chair): I don’t want to strain your voice. But I’ll ask, first of all…. I was hoping to hear from siblings, because I think that’s really a key. We don’t often…. It’s the parent who takes that role. I know you’re both doing it together, but as a sibling, it’s just really important. You’ve done a really good job of expressing yourself.

My question is about your relationship with CYSN. I don’t want to personalize it in the ministry and such. Have you had any positive, nurturing or supportive relationships in the professional services? I don’t even mean just one ministry, but anywhere. Have you found an advocate in the system?

A. Wicks: I have not. I did have a few that…. When I met with Savannah’s worker in 2005, I did have an advocate who came with me. But other than that, I mostly just did it on my own. I think I’m a pretty good advocate for my daughter, at least. My son, I wasn’t as prepared. With my daughter, I went back to school. I took community support, education assistant and mental health and addiction. I spent two years just learning so I could be a better parent to her.

N. Simons (Chair): Well, good for you. It’s a story of resilience as opposed to one of defeat. You’re giving other people some inspiration with your ability to fight.

Now, my other question is: have you thought about going to your member of the Legislature to talk to them, perhaps, about your challenges?

A. Wicks: I have a little bit. A lot of our challenges are also in school. I currently have my second human rights claim in the school in regards to my daughter.

I have advocated really hard for her to be allowed to be in a classroom and not isolated. In doing so, she will graduate next year, and she will graduate on a regular curriculum. She will graduate with her Dogwood. In December of this year, Savannah got 93 percent on a math exam. It was the second-highest score in the class.

I guess, really, my message in that is that when we give them these services when they’re young, they can jump the hurdles that people don’t think they can do. When Savannah was in grade 2, her teacher wrote in her report card that she would never be successful in life. Now she’s going to graduate and go onto university. I don’t think she would have had that opportunity if I had listened to what I was told and just put her into a segregated classroom that offered her only life skills.

Recently, at school, there have been some issues. There’s been retaliation due to the human rights claim, is just the easiest way to put it. From that, I did write to the Deputy Minister of Education. I basically just got a generic letter back. So you know, I will go on to the Minister of Education next. I mean, I don’t usually give up fairly easily.

N. Simons (Chair): No, no one wants you to give up. I think my suggestion, in addition to what you’ve already done so successfully, is to contact your own member of the Legislature, at least to inform them of your struggles and to maybe ask if there’s any way they can be of assistance to you as you navigate through this complex area.

[11:10 a.m.]

I just want to say that you’ve given us an insight that we hadn’t yet heard, and I think that’s just a…. We’re very grateful for your presence here, both of you. Thank you very much.

Rachna, did you have a question?

R. Singh: Yes.

N. Simons (Chair): Oh, Michelle does too. Sorry.

Rachna, go ahead.

R. Singh: Thank you so much for your presentation. I really appreciate you coming and taking the time to tell this heart-warming story.

Just one clarification. Maybe I missed it, but you said that your younger daughter was diagnosed at two but did not get any services through MCFD. Why was that?

A. Wicks: I don’t know. I went in for the meeting, and they told me there was nothing available, and she was put onto a wait-list.

R. Singh: What was the diagnosis?

A. Wicks: She has autism spectrum disorder, mild generalized developmental disability, and she has a seizure disorder.

R. Singh: Right. But no services were given. She could not get any service.

N. Simons (Chair): No service.

A. Wicks: No, none.

L. Throness: Not $22,000 a year?

A. Wicks: She got that, the autism intervention…. Well, we didn’t get it. She went to Queen Alexandra.

R. Singh: Okay. Thank you so much.

L. Throness: So she did get the funding every year up until now, even, from the ministry?

A. Wicks: Oh, her autism funding?

L. Throness: Yeah.

A. Wicks: Yes. That’s all she gets. She doesn’t get any services other than that.

L. Throness: Looking at that, there has been some real success with your daughter, given that she’s graduating from high school and she’s going on to university. I would think that’s a real success.

A. Wicks: Oh, yes, but the services that she gets…. She goes to counselling. That’s what the money is used for. She goes to a counsellor for anxiety.

N. Simons (Chair): Thank you again for your presentation, Adrianne and Sierra. I appreciate you, and I hope you feel better soon. Thank you very much.

We’ll take a one-minute recess to adjust the phones.

The committee recessed from 11:12 a.m. to 11:13 a.m.

[N. Simons in the chair.]

N. Simons (Chair): On the phone, I believe, we have Nadia Crawford.

Thank you for joining us. You’ll have ten minutes for your presentation. I’ll give you a two-minute warning by interrupting you rudely. Go ahead, Nadia.

NADIA CRAWFORD

N. Crawford: All right. Well, good morning, everyone. I’m Nadia Crawford. I’m going to read off what I put in. It’s a 14-year journey in my ten-minute presentation, so I’ll be as brief as I can.

I’m calling today on behalf of my family — my husband, Paul, and our children Noah and Ayden, who’s 13. He’s going to be turning 14 this week. Ayden is currently residing in Port Coquitlam under Arcus community since September 2016. It’s an ABA support home. It’s a non-resident staff. There’s a team leader that’s at the house four days a week, and the staff basically go in and out to do their shifts. There is only Ayden who lives there.

Ayden has a very complex profile. He was diagnosed with autism around age four, and later — more tests and everything — he was diagnosed with a rare genetic disorder which is called Potocki-Lupski syndrome. It has a lot of similarity with autism-like behaviour.

[11:15 a.m.]

He also has developed delays. He suffers from depression and anxiety, borderline Tourette’s, mood disorder and stereotypic movement disorder, which is called SMD. He has underlying bipolar, and he suffered from agitated catatonia. But the most devastating for him are the severe self-injurious behaviours that he’s gone through over the years.

We went through almost all the traditional medicines with him, about 20 so far. Nothing was working. He was hospitalized one week at B.C. Children’s infant psychiatry last year, and he was transferred to the adolescent psychiatry in Surrey for three weeks. So he was in hospital for a month because of his severe injurious behaviour. Unfortunately, they were not able to help him, so we left with the same thing that we came in with.

He has had ECT therapy, which is electroconvulsive therapy. That did not work either. The next medications proposed were lithium or opioids. As you know, there are a lot of side effects with all those medications. We just didn’t want to go through that line. So, with the doctors, we decided to try medical cannabis oil. It’s currently not funded. We have to pay from pocket. We’re working on that. We’ve been using that for him since March.

We have had amazing results. Most of the days he’s down to zero SIB, which is self-injurious behaviour. We’re in a wait-and-see period for dosage and long term, just to make sure that this is really what’s happening and not just a cycle for him, but so far we’ve had two incredible months. He’s happy. He’s running around. He’s going to see the zoo. I mean, it’s like night and day from where he was. He’s gaining weight because he’s eating more because of the cannabis.

Just briefly, to give you the beginning of his life, early on, Ayden…. At birth, we noticed unusual behaviour when he was very little — not being able to look you in the eye, and the milestones were really late. At nine or ten months old, he would not sit unattended. Basically, he would go backwards like a wood plank and hit his head — straight on the back of his head. He’d hit his stroller, his cot. When he was holding his bottle for the first time, he would just kind of hit it on his head. So we couldn’t give him any toys. We had to give him anything soft, but other than that, he would just bruise his forehead.

We started asking questions to the doctors. We were aware something was going on, so we changed pediatrician, and so forth. We were advised to get a diagnosis to confirm ASD early on. We had early childhood development involved at that time. They were helping with physio.

We were told we had to wait a year plus for diagnosis with the system, so we had to go through Monarch House in Burnaby. We paid close to $3,000 up front to get a diagnosis right away. This place was too far for therapies, and they wanted us there five days a week, so basically, we said: “No. We’re going to go through figuring it out ourselves.” So we were given an MCFD autism book, and that was it. Nobody has ever followed up with us.

We got home, and I tried to figure it out on line, searching for the best therapy. Who? How much? I was new to the whole thing. I did reach ACT autism at that time, but they were not helpful. Nobody wanted to talk to me, have a conversation and say, “Okay, this is kind of what it might look like,” and so forth. I was pretty much redirected to on-line information that I had to read, and it’s pretty extensive reading. So I was pretty overwhelmed from the get-go.

I had to go through the list of providers. Most companies had no availability. They had no consultants. The lists were not up to date. It took me about five months to find a company. We went with the company, and they were really black and white with ABA. There was no gray in between. I could hear Ayden scream downstairs, crying. He was not having any fun at all with any of that therapy.

We were with them for about a year and a half to see how it went. In the second year, they pretty much used all the $22,000, and they didn’t want, at that time, to use any of that money for speech or physio. Really they just wanted all the money, which was crazy, with little hours of actual firm therapy at home. All this money goes to the company, the junior therapists, the consultant therapists, and then you get trickle-down to their little hours to have firsthand help.

[11:20 a.m.]

So I started over again. I did hiring privately for a while. We had no consultants. We just didn’t have any budget, because he was going to school at the time.

With the $6,000 a year, it was very thin. It was difficult with the autism funding to have the staff paid on time. Most of the time it took about three weeks for a cheque to come back. Christmas and summertime were just terrible. It would take longer than five weeks. Lots of times I had to prepay from my own pocket and hope that they would give me back the cheque signed by them. It was just always problems because it wasn’t quick enough. I know it’s changed over the years, but this is from our experience over ten years ago.

All this time we had a social worker file open. We barely got any visits — no phone calls, no follow-up. We were new to this. I wasn’t aware of any programs or services. Nothing was forthcoming. So basically, it’s our fourth social worker right now. We kind of got rid of the first two. Sorry to be blunt, but the first one was, unfortunately, incompetent. She wanted me to send her email reminders of questions that I had, if she talked me on the phone, and the services that I might be looking for. It was just terrible all around.

So we changed. We had a second one who tried his hardest, but we had to push back for more funding all the time because $6,000 wasn’t enough hours in a week in order to have somebody to help him. We were told we could get some respite money, which would come in at $1,000 for one time only, I was told, and you had to ask again, over and over for enough funding to just get through the year. And we had to go through at-home programs for different things. Like for speech therapy, we had funding just for once a month. That’s all you could get. There was no other money.

I was pretty exhausted by then. Ayden was seven or eight years old. I even tried to talk to the supervisor who is still looking after us to come and see us. I was crying. I was calling. I was begging. I was doing all of that. I was being very polite, but I needed for them to understand that we needed more help. That’s what we needed, and it had to come in the form of money in order to pay the providers and so forth. I was told many times that I was very lucky I was getting the extra respite money — that they had too many cases, their load was full, and there was not enough money to go to around. That’s what I was told by people there.

There were a lot of things, obviously. We had seven years of staff coming in and out, going in our house, with this child who screamed all day, hit himself…. It was draining. We couldn’t do anything more, and we had to make the hard decision to send Ayden to Arcus, and we even had to fight for that. This was a suggestion from a doctor at Children’s Hospital.

The basic line for us is that it’s a lack of creativity to help families. We were advised over the years that we needed to get away minimum once a month. Financially, it was not possible. We look at the foster system; people get money to care for children. But for parents, it’s very limited, so nobody can….

Financially, we’re ruined. We had such a hard time with financials. I went from full-time to part-time to no job. Currently I’m on pension disability, diagnosed with severe depression and anxiety.

I’ll just give you my suggestions, because I know I’m running out of time. For us, it would have been nice to have — and I don’t know if it exists today, because I haven’t heard anything — a special office that would be managed for people who went through this system, like us, for parents and caregivers — a place to talk, release, a place to be guided through the journey from the start. What are you supposed to do? Where can you go? How does this work? It should be multiple languages, because a lot of people don’t speak English.

I was very fortunate, because I’ve been advocating for Ayden, but I know a lot of families don’t have the willingness and the help to do that. I lost my health in this. I wish I’d had more help over the years, because I even had to ask the ministry for a counsellor, to see if there were any programs. I was told: “Well, it doesn’t exist here. Call there.” You get a 12-week session, and that’s it. You’re supposed to be better after that.

[11:25 a.m.]

It’s a very difficult journey. It’s 14 years in the making, and we’re still going at it. I’m going to be dead before I give up on our kid.

N. Simons (Chair): Well, it sounds like you’ve been a very strong advocate. Listening to your story helps us understand some of the challenges that families have and, obviously, some of the solutions as well. I’m looking around at my committee colleagues, and I see that you have obviously expressed yourself completely and fully. I really appreciate that you’ve taken the time. I hope that Arcus is good for Ayden. What you’ve told us here will be very helpful in our deliberations. Thank you very much. Merci beaucoup.

N. Crawford: Okay. Merci. Bye-bye.

N. Simons (Chair): Okay, committee members. Our next presenters are here and prepared to provide their testimony. It’s Jeanine Demmler.

Welcome to the committee. Thank you for being here. You probably know that the little green light will give you two minutes, and then the red light will be timed for questions. Thank you for being here.

JEANINE DEMMLER

J. Demmler: Good morning. Thank you for allowing me to speak today. My name is Jeanine Demmler, and I’m lucky enough to be the mother of a 15-year-old son and a ten-year-old daughter. I wanted to speak to you because I hope I can strengthen the voices of other parents, caregivers and service providers who will be sharing their stories today, and perhaps I can add something to the discussion.

I’d like to start by telling you about myself. I’m a 53-year-old Canadian-Caucasian woman, and I’m married to a 50-year-old Caucasian man who works in the investment industry. Both my husband and myself have university undergraduate degrees, and I went on to complete a graduate degree so that I could become a pediatric speech-language pathologist.

I worked for about a decade until my son was born. At that time, I really wanted to stay home and be a full-time parent, and because I have a supportive partner who makes a good income, I was able to do that. I continued in that role until last September, when again I became a full-time student. My children were nine and 14 at the time.

Recently my ten-year-old daughter was diagnosed with ADHD, which I consider to be a diagnosis of neurodiversity. From the time she was an infant, we were aware that she wasn’t quite like other kids her age. Since the age of three, our daughter and our family have been involved with a wide variety of professionals in our attempt to figure out what was going on for her and how best to help her.

Through the public system, we’ve been seen by our wonderful GP; received visits from service providers at Queen Alexandra; had appointments with two different pediatricians; benefited from the Confident Parents, Thriving Kids telephone counselling program; and, finally, become involved with an outstanding pediatric psychiatrist, who supports our opinion fully and is now helping us work with medications.

Through private service providers, we were involved with a social skills group. We have ongoing appointments with a psychologist, and we attended occupational therapy sessions for about a year for my daughter’s sensory processing issues.

I’m also going to talk about my son. He does not have a diagnosis of neurodiversity, but we had some significant issues with him. It’s very relatable to what has happened for my daughter.

Just before he turned 11, out of the blue, his body, from the top of his head to the top of his feet, was covered with itchy, scaly eczema. We had frequent appointments with my son’s allergist, but his skin continued to deteriorate for about a year until the point that his hands were covered in painful blisters and he couldn’t hold a pen or use a keyboard.

The week this happened I walked into the allergist’s office four days in a row until I got a referral that my son obviously needed. Because of the fantastic MOA in the office, it only took about six weeks to access the services of a dermatologist and another four months to see a pediatric allergist. In the meantime, I took my son out of middle school so that we could devote the time necessary to deal with the medical condition.

I asked several other families as well as educators what they’d like me to talk about today. There were two key points that everyone provided. I opened my presentation by introducing myself to you, not because I think I’m so fantastic but because I think it’s actually one of the most important points I have to make today.

[11:30 a.m.]

I’m a very privileged person — the colour of my skin, my competence in English, the time I’ve been able to devote to my children’s needs and their many appointments, the financial ability to pay for counselling, occupational therapy, group interventions and medications, the knowledge I’ve gained through my training and practice as well as my ability to navigate through the system to finally get to the help we so desperately needed. Our family is lucky enough to have a GP, and we have the support of local grandparents.

I’d also like to give myself a little credit for continuing to believe there was help for my children and continuing to advocate for them. It took me a year to get to the right starting place for my son, and seven years for my daughter. Over those years, I will share that there were many days when I was 100 percent certain that I didn’t have the strength to continue the advocacy, let alone get up the next morning to face the daily struggles I encountered because of my children’s needs. I wonder about the many families who lack the resources that I have. How are they able to access services for their children?

The second point I wanted to highlight was the resistance I encountered in trying to get services. While my children’s needs were different, the experience was very similar. One roadblock was the reluctance of medical specialists to make referrals. My GP has been very helpful with referrals, but the specialists were very hesitant to refer further. The pediatrician did not want to refer my daughter to a psychiatrist, and the allergist didn’t want to refer my son to a dermatologist. Why did this happen? Why did I waste taxpayer money on multiple appointments with resistant physicians?

The other problem, particularly for neurodiverse children, is that there is a lack of understanding about these conditions. There were only two professionals that I encountered who took my concerns about my daughter seriously enough to move beyond an initial appointment phase, even though I educated myself by attending workshops, reading books and looking through websites. All of these sources indicated that my daughter needed further help. We became aware of the social skills group and the occupational therapist because we had a supportive psychologist.

As a speech pathologist, when I was working, I en­coun­tered similar difficulties when I recommended to families that their children required further assessment by other professionals. While I appreciate that one person can’t know everything, it doesn’t make sense to me that further investigation is not warranted, despite repeated requests from the family and other professionals involved with a child.

Two final points that I’d like to make. When I was working as a speech pathologist, I was always happy that families of children with a diagnosis of ASD were able to access funding so that they could get services for their children. What frustrated and saddened me was that there wasn’t funding for other children with significant difficulties — just because they didn’t have that diagnosis. I’m hoping the government might consider a different approach to funding that looks at individual child and family need, not just a diagnosis.

In addition, as a speech pathologist, I provided excellent assessment and intervention for my preschool clients, although at times there could be wait-lists for those clients. Publicly funded assessment and therapy services for school-age children drop dramatically in quality and amount as children age through the school system, and then they disappear after high school graduation. Individuals with a diagnosis of neurodiversity have this diagnosis forever, and while their needs may change throughout their childhood and adulthood, they don’t disappear.

Thank you very much for listening. I really appreciate the time today.

N. Simons (Chair): Well, we really appreciate you taking the time to come and give us your perspective. We have often talked about those who come and give testimony here and how they represent other voices who are unable to make it. Thank you for pointing out that that’s partly why you were motivated to come today.

Looking at my committee members…. Laurie, you have a question.

L. Throness: Just a question about one of your main points. That was the hesitancy of physicians to refer. That’s a medical decision by a medical professional. I’m just wondering how this committee could address that. Why do you think it was that they were hesitant to refer?

J. Demmler: Good questions. I guess they were hesitant to refer because they didn’t understand the issues that my daughter was going through. When we talked about ADHD, there’s a very narrow understanding of what ADHD means, even though we know that it’s an issue with brain stimulation. Because my daughter wasn’t jumping out of her seat every two seconds in the classroom, nobody would do anything further about that. I guess I’m not sure what you can do about it per se. But I definitely think there need to be some changes in how some of these neurodiversity diagnoses…. How we approach it…. Actually, I did have a thought on that. It’s just left my head.

[11:35 a.m.]

I think part of it is that I went to see doctors repeatedly. So why wasn’t my opinion about my child taken seriously? Why was I wasting everybody’s time?

N. Simons (Chair): Thank you. Your response was, I think, what Laurie was looking for.

Ronna-Rae.

R. Leonard: Thank you for your presentation. Your first point was about the fact that you have the capacity to advocate for your child. I just commend you for not giving up. We hear a lot of people who come here and speak to us who have not given up, and that’s why they’re here.

Do you have an idea of what would be a solution for people who aren’t in the position that you are — to be able to advocate on behalf of their children through the myriad systems that you have to face? Do you have an idea of how to help others who don’t have the same capacity?

J. Demmler: Well, actually, I had heard that there are positions in other provinces for advocates for people trying to navigate the medical system. This could be for anything, like a cancer diagnosis or any other type of complicated medical condition, if there was someone who could help a family navigate in that way.

As a speech pathologist, you would try your best to be able to help people do that. But you’re also being paid to perform a specific function, so you can only do so much with that.

I considered…. When I made the decision to go back to school, that was actually something I kind of wondered about. Where I’d heard about it was…. I’m not sure if it was Manitoba or Ontario. But I’m not sure there are any positions like that, in particular, in B.C.

N. Simons (Chair): We’ve heard suggestions over our public consultation period. So that reaffirms the suggestions we’ve heard about needing patient navigators or client navigators, in this case.

Thank you very much, Janine. Appreciate you taking the time to come and see us.

Let the committee please call Hazel Currie up to the table.

We look forward to hearing, Hazel, what you have to tell us. You have ten minutes for your presentation, followed by five minutes of questions. The green light will indicate that you have two minutes away from questions.

HAZEL CURRIE

H. Currie: Thank you very much, standing committee, members on the phone and also fellow parents. I appreciate the opportunity to speak with you today and to provide my submission regarding the neurodiversity assessment eligibility.

My name is Hazel Currie. I’m a parent of a child who has ASD. I probably don’t have much to say that you guys haven’t heard already all these months and weeks and many families, so I’m going to probably keep it quite short. I’ll just speak from the heart.

First, I want to give a name and a face. A few years ago, I would have given his name. But now that he’s a teenager, he doesn’t want his name anywhere. All these years, I’ve started all our IEP meetings…. That’s individual educational assessment plans. I first put a picture of him on the table to show people that it’s a real person.

N. Simons (Chair): Thank you for doing that.

H. Currie: We’re talking about a real child and a real person.

Basically, my point is that I’ve always treated information as my most valuable tool, and that’s assessment. My child was designated as gifted, actually, in grade 2, and with a learning disability of dysgraphia. Many of you may have heard that dysgraphia and gifted go hand in hand. That was sort of his primary experience, somewhat, but he was diagnosed with ASD this past September, at age 13.

You’re probably wondering about our assessment tools that we used. My point I want to make is that our assessment tool we used is money. This is what we used. All of our assessments were paid for privately by our family. We would not have had access to the supports we needed in a timely manner otherwise.

In elementary school, we’re told…. Our public school got two psycho-ed assessments a year. That’s it.

[11:40 a.m.]

Generally, they’re for kids more needy and more…. Not more worthy. Our kids certainly were. But I certainly never got the feeling that I should try to lobby for something like that, and I didn’t want to. We had the ability to pay privately. Overall, we’ve paid for three educational assessments privately, and we’ve also paid for autism assessment privately.

The one reason that we did the private autism assessment was that the delay of getting on the waiting list to treatment would have meant my son, who’s in grade 9, would have had no supports this year. By the time we’d be on the list, we would have probably had no educational supports next year. You’re looking at a child, for grade 11, to have supports. I ask you what you would do — three educational assessments and autism, all privately done.

My bottom line. My suggestion is that I think we need more educational psychologists. I know there’s a plethora of suggestions, but that’s what mine is — to increase more assessment in the school system. I just wanted to end with a few key words. Again, I didn’t expect to feel emotional, so I hope I can say them: struggle, overwhelming, stigma, challenge, persistence, emotions, uncertainty, love, acceptance and uniqueness.

N. Simons (Chair): That was well said. It was succinct when you put it into simple words that just all carry with them a connotation that, I think, you presented really well. It’s important for us to understand that emotion is part of this. It’s a strength that you can bring that to us. Thank you for that.

L. Throness: A question about costs. You were able to pay privately. I appreciate your commitment to your child in that regard. The four assessments cost about how much, would you say?

H. Currie: We did one, $2,600, and $2,600 for another one. We travelled to Vancouver from Victoria. So you’d add that cost. I’d say, roughly, between $2,500 to $3,000.

L. Throness: Each one?

H. Currie: That’s correct.

L. Throness: And that enabled you to get the autism funding for years to come?

H. Currie: That’s correct. We would have eventually hit the public list. I just kept us on the list, even though we were finished the diagnosis, just to see at what point we would hit the list. It certainly wouldn’t have helped us this year and, possibly, next year. With the education funding model of a September 30 cutoff, we likely wouldn’t have cut it off for next year either.

R. Leonard: Thank you for your presentation. You’ve had a long journey with your son before you got the autism diagnosis. We’ve heard about the various systems that there are along the way. One of them is the early childhood years. I’m just wondering if there was any time when there was an interface for you with the system that raised flags, other than the dysgraphia and being gifted, that could have helped you get a diagnosis a lot sooner than age 13?

H. Currie: We certainly, probably, would have had an opportunity to have a diagnosis earlier, but frankly, we’d just done two other assessments, and I didn’t see an advantage at that point or anything we would be doing differently with an autism assessment. Like the previous speaker, I feel very much at an advantage. I was at home full-time with my kids. Through our family means, we were able to step up and get some of these assessments done. I do have a background and experience, I’m organized, and I was able to advocate appropriately for my children. I feel very badly for a lot of people who don’t have that.

R. Leonard: In your long list of your experience, one of them that you mentioned was stigma. I’m just wondering where that fits into your story.

H. Currie: That’s exactly it; that’s a great point. It is a stigma. That was part of our decision not to pursue it, at the time. One, we didn’t see that it would make a difference at the time. Two, there’s the stigma in a smaller elementary school, when you’re already having two other diagnoses, and when he is seemingly fitting in great. He got 97 percent in science. He was on the school ski team this year. He’s doing very well compared to other families, but of course, we have other situations and other issues. He’s doing well. The stigma was something that certainly was in my mind, frankly, yes.

[11:45 a.m.]

N. Simons (Chair): I think that by your presentation here, it’s incremental, but the stigma does generally…. We’re hoping that it fades and that you’re part of that process.

H. Currie: Well, part of the reason for wanting to pursue it at a high school level is that I did not feel like there was a stigma at this level. You’re not in the same classes. It’s a smaller community; you don’t have as many parent volunteers. It feels a lot more open. Frankly, we’ve had a fantastic, supportive environment. I don’t know if you’ve heard great things as well, but I’ve been very, very happy with the supports we’ve received in high school. They’ve exceeded my expectations. It’s true.

N. Simons (Chair): Well, we haven’t heard that much. Thank you so much. We really appreciate you taking the time and coming and speaking to us.

H. Currie: I appreciate it. I apologize for my unexpected emotional….

N. Simons (Chair): That’s why we have Kleenex on the desk. Thank you very much. Much appreciated.

Our final morning presentation is from Tracy Humphreys, from the BCEdAccess Society.

I’d like to welcome you, Tracy. Good to see you. Thanks for coming. You know the rules.

BCEDACCESS SOCIETY

T. Humphreys: I think so. This is my second time in front of a committee. This is a much more intimidating room, for sure. I wanted to just start by acknowledging that we’re on the land of the Lkwungen-speaking peoples and the Esquimalt and Saanich First Nations, I believe. I just wanted to say how grateful I am to be able to live, work and advocate in this beautiful place. We’re very fortunate.

I’m the founder and chair of the BCEdAccess Society. We’re a parent-run organization, entirely volunteer-run, for families of children with disabilities and complex learners — what some people call special needs children. We provide peer-to-peer support, and we advocate for equitable access to education. I read through a lot of the previous transcripts. I note that a couple of parents mentioned equitable access to education. They were talking about us as an organization and as a group.

I’m also a parent of three neurodiverse children, and I’m neurodiverse myself. I have ADHD. My kids have a long list of diagnoses, like many: autism; ADHD; along with that, PTSD; generalized anxiety disorder. Things kind of pile up. I don’t know of anyone, really, who just has an autism diagnosis, for example.

It was really hard to narrow down what I would talk about because I speak to so many families on a daily basis. I could tell my own story — it’s something to say — but I really just wanted to make a few quick points. Like I said, I read through the transcripts and tried to find things that hadn’t been touched on as much. One of the things that I wanted to note is that there’s a need to build capacity in children and youth to become self-advocates where possible and as much as possible. We’re talking about them, and they need to be more involved in these conversations.

The other thing I wanted to talk about, briefly, is exclusions. As an organization, we set up a tracker, in September of this year, for parents to be able to record the exclusion of their children from school. Kids are excluded in a variety of ways for a variety of reasons. We just wanted to collect the data and maybe encourage school districts to look at their own data as well, by seeing what we have found — to start tracking their own data and figure out some solutions. Really, what we’re all trying to do is to fix the issues for kids.

A common practice — it’s become more and more common — is kids being allowed to participate in school only for partial days, some for as few as an hour a day. They’re not attending school anywhere near full-time. There are over 3,000 instances of exclusion that we’ve recorded since September, all over the province, in pretty much every district. There’s no one who’s special, better, worse. It’s actually an issue across the country and around the world, as we’ve been discovering.

This is, obviously, a discriminatory practice, but as others have said, the burden being on parents to pursue that discrimination is a huge challenge. One of the things we’d like to see is flipping that around — pursuing change to the system and reducing barriers, rather than parents having to pursue advocacy when things go wrong. I mean, that’s what we see in our group. We mainly gather people when things have hit a crisis point, and we try to help disseminate where they need to go to get help.

[11:50 a.m.]

Some simple solutions are training at the post-secondary level and in-service training for all school staff to better understand inclusive education and how to work with people with disabilities.

One of the things that we note is that EAs, educational assistants, don’t work full-time in any district that I’m aware of. They don’t work year-round. They’re hourly, part-time, running out the door to their second or third job. So they can’t really be a good part of the school team the way that they should be. They’re so essential to those kids.

One of the really specific ways that this creates a problem of exclusion is at the beginning of the school year, just one example. Kids are not able to attend, are not allowed to attend, the first day, maybe the second day, some for as long as a month because they have not got everything set up and prepared to welcome those kids to school on the first day of school, like all of their peers. This has a lot to do with EA support not being in place on day one. There are other reasons, but that’s one of them.

I know a lot of people have talked about transitions. I didn’t see a lot of talk about transitions in school. So I wanted to address the transition from before school to kindergarten.

One parent mentioned to me, in particular, and then lots of parents kind of echoed that…. They were in a child development centre. Their kids had this amazing, supportive program — really specific to their needs, really effective. Things were working really well. Shift to kindergarten. First, they had a hard time even being heard, as to what that programming was and why it worked so well. Second, there just was not the capacity in the school system to implement those same systems that were so effective for that child. That’s where the exclusion started, again. You think your child might not be able to manage full days.

Then the next transition is elementary to middle school and middle school to high school. Those changes aren’t trivial for anyone, but for neurodiverse people, change is particularly challenging. Transitions are hard, especially when they’re inadequately supported.

A few years ago we did a couple of surveys, two years in a row, about families feeling that their kids are forced out of the public system. They felt forced out because of the inadequacy of the supports. So they ended up in distributed learning, independent schools, independent distributed learning, home-schooling.

The main reason I mention this is because the exodus happens at those transition points. It happens at elementary to middle school, middle school to high school. So it’s important to look at that and consider: why is that happening, and how can we fix that transition point?

Then grade 12 to college or university or community or employment is also described as a cliff that you fall off of at the end of school. You have all this support, this funding. Perhaps you have autism funding or at-home funding or any number of different funding systems of support, and by and large, it disappears entirely.

Some students have access still, when they transition out, if they meet the criteria for CLBC. But for the most part, there’s absolutely zero, nothing. It’s good to know that there’s some help now for kids in care. That’s a really good bit of progress, but there are a lot of kids who haven’t ended up in that category. They still need equitable support.

I don’t know how I’m doing for time.

N. Simons (Chair): You have three minutes.

T. Humphreys: I was going to talk about psycho-educational assessments. I’m going to make a really quick point. They made it…. In the last talk, they talked about how schools only get maybe two per year. It varies from six to about two per year. So what ends up happening is it’s those people transitioning out of high school that tend to get assessed, when the assessment really needs to happen in the early years because, as we know, early intervention is key in these cases.

I’m going to skip over what else I was going to say. I just want to say, reading the Representative for Children and Youth’s transcript…. I know these families. I’ve talked to almost all of them. As you might have noticed, I know all the families in this room. We tend to be like the fulcrum group that kind of directs people to different avenues of advocacy, and it’s really especially hard when you hit a wall where you have nothing to tell them. There’s nowhere for them to go.

[11:55 a.m.]

I also wanted to just mention that I really appreciate that you’ve been listening to these stories for, I don’t know, the last month or so, a couple of months. And it’s hard. It’s hard for me to listen to it all the time. So I know how hard it must be for you.

The last thing I want to say is that I didn’t know Charlie’s family, from the Alone and Afraid report. I worry the most about those families. They don’t end up connected with groups like us. I would like to do more outreach, but as I mentioned, we’re a volunteer-run organization. We have no funding. We need to work on that. But that’s where I struggle, is those families. We have to do more so that the burden doesn’t fall on them and so that we aren’t acting only when there’s a crisis.

N. Simons (Chair): Tracy, thank you very much. It’s quite clear that you’re devoted to helping families. That’s important for us to see. Families do come to MLA offices too.

T. Humphreys: Oh, I know.

N. Simons (Chair): I hope we can all be advocates for each other.

I’m looking to my committee members. Laurie has a question.

L. Throness: Just wondering: is the practice of schools excluding kids, just one hour a day, as you said, which is concerning…? Is that a growing practice?

T. Humphreys: Yes.

L. Throness: What do you do with a child when they can only go to school for a day?

T. Humphreys: Is your question: what do you do as a parent or as a school?

L. Throness: Yeah. What do you do as a parent?

T. Humphreys: I had ten minutes, so I couldn’t get into all of it. Thank you for asking. What happens to families…. In the worst cases, they lose their job. Their families break down. There is lots of divorce. Lots of people end up single parenting directly as a result of exclusion from school.

There can be a breakdown in the home. You can imagine that if there are challenging behaviours at school, those challenging behaviours will translate to home. They don’t have the support in the home. They don’t have the respite. You’ve heard all of these stories. That builds into, potentially, violence in the home, all kinds of challenges.

Ultimately, the suggestion becomes, from MCFD or other quarters, to put your child in care so that they can actually be supported, rather than providing supports in the home. That’s the worst-case scenario, but I’ve heard that story at least a dozen times this year alone.

N. Simons (Chair): Not to mention a deteriorated relationship with the education system and everything that goes with that.

T. Humphreys: Oh, absolutely. It’s burned by that point. Yeah.

R. Leonard: Thank you for your presentation. Actually, on the exclusion piece…. I’ve experienced this too. There are parents who, in protective mode, seeing that there isn’t enough support in the education system, choose to embrace the exclusion practice. You can see why. There are some advantages to it as well.

I’m assuming that the exclusion practice isn’t ill-intentioned, to try to exclude them, so much as they don’t have the capacity to deal with it appropriately.

T. Humphreys: I think that that’s it. I think it’s also that…. They aren’t using the tools that they do have. That comes back to the training piece that I was talking about — the necessity for adequately trained staff.

One of the first steps that you take when you see challenging behaviours in school is to perform a functional behavioural assessment. I rarely ever hear that that’s actually been done prior to an exclusion.

There are a lot of things they could be doing that they’re not. It could be capacity, as you say. Maybe they don’t have enough staff. Maybe they don’t have the right, trained staff in place. It’s a gap.

R. Leonard: We’ve heard some other quite horrifying stories, too, about how schools have dealt with the issues that they don’t have the capacity to deal with.

I’m just wondering what your position is around…. We’ve heard quite a number of people talking about the need for more collaboration.

T. Humphreys: Between ministries?

R. Leonard: Yeah. Is that something…?

T. Humphreys: For a parent, they don’t know who they’re dealing with, which ministry. They don’t keep a list. “This is who I’m talking to now.” They expect that everyone is talking together.

Honestly, when they realize that that’s not happening…. That’s a huge source of frustration, having to tell your story over and over and over again.

N. Simons (Chair): Tracy, thank you for the work you do. I hope you have an opportunity to mention to those that you’re working for and with that we do accept written submissions, and they don’t have to be beautifully formatted with flowery words. They can be just their experience in a couple of sentences — as simple as that. Thank you very much for coming. On behalf of all committee members — present in the room, on the phone and not here — thank you for your testimony.

With that, the committee will stand adjourned for lunch.

The committee recessed from 12 noon to 12:59 p.m.

[N. Simons in the chair.]

N. Simons (Chair): Good afternoon, committee members, guests and those listening at home or where they happen to be. This is the Select Standing Committee on Children and Youth. We’re continuing with our public consultation on the special project, looking at services, and processes for accessing services, for children with neurodiverse special needs and their families.

As we continue on from this morning, we’re ready to go. We have with us David Gerry.

It’s great to have you here. Thank you for coming. You have ten minutes.

[1:00 p.m.]

DAVID GERRY

D. Gerry: Thank you. It’s a privilege to appear before this committee. I’ve called my presentation “FASD: The Silent Tsunami.” I came to the world of FASD because my wife was working in child protection. She’s a social worker from Ireland and came here.

On Valentine’s Day exactly 20 years ago, two children moved in with us, seven and nine years old. It was hell on wheels for a year until I heard about FASD. I went to a conference in Vancouver. When I heard about it, it was a cataclysmic shift in our parenting, because we understood differently. We had different expectations. I could no longer work in the field I was in. The kids were so intense.

I started a charity called the FASD Community Circle. We set up the first on-the-Island multidisciplinary pediatric team in collaboration with UVic neuropsych, Vancouver Island Health and ourselves. We got another clinic going; diagnosed 20 at-risk women. Again, parents driving the agenda. We had two parents on our board.

The reports they got from Sunny Hill were almost useless because they didn’t really bring any services. So we got somebody trained up, and that process has morphed somewhat into the FASD key worker program provincewide. But it was again driven by parent need.

My bio is there. I’d like to run over some stats. I only found out about this opportunity, so I haven’t researched as thoroughly as I would like to have. Last year there were 44,100 births in B.C. The Canada FAS national partnership gives the prevalence in Canada of FAS at 4 percent, which would be about 1,700 births a year in B.C. That’s five babies a day or one every five hours.

Estimating the number of kids. If it’s 4 percent of our population, which is five million, that would be 20,000 people, so it would be about 40,000 kids. That’s why I call it the silent tsunami. Health Canada has been tracking the numbers. It’s $1½ million to $1¾ million added costs to taxpayers for everybody prenatally alcohol-exposed.

As foster parents, we sort of worked our way up as the kids became more and more challenging. We are a level 4 — some of you guys are social workers — and then there’s only one after that. They’re very, very expensive to care for in any context.

There are 8,000 kids in care in B.C. The research is that anywhere between 25 and 50 percent of the kids who are in care are exposed. Again, the same sort of data across North America. About 25 percent of people in prison are prenatally exposed, but the caveat there is you need confirmation from the mother of her drinking during the pregnancy. Therefore, by the time they’re in adult jail, they’ve lost touch with her, or whatever. You can’t get confirmation, so you can’t get the diagnosis.

One of the papers I’ve brought you was published in 2016, Life Expectancy of People with Fetal Alcohol Syndrome. It’s only 34 if you don’t get supports. I’d suggest that there is no other medical condition in the world where you have a life expectancy of 34 and so little supports, recognition or services. Another paper that I provided you with was a shock, as well, when it came out in 2016. There are 428 statistically significant medical conditions associated with…. This was in Lancet. There’s a whole list of authors. They’re all internationally recognized.

Our personal experience was we knew that our daughter…. She had open-heart surgery at 13 months. She had an aortic septal defect repaired. The population with FAS is ten times as likely as babies to require open-heart surgery or fairly intense cardiology intervention — very expensive stuff.

Until I read this Lancet paper, I thought the fact that our son had chronic, reoccurring, terrible ear infections was a function…. They’d been in six foster homes in 24 months, and I just thought it was really inadequate care.

It turns out, when you read this paper — well, I did anyway — and you read between the lines, if you have FAS, you’re 128 times more likely to have mild to severe hearing loss because of chronically obstructed Eustachian tubes. Those are just some of the highlights of this study. It really begs for training people in all medical professions that un­der­lying a lot of other things is probably prenatal exposure.

[1:05 p.m.]

Ninety-two percent of people will get at least one diagnosis of mental health, and people with FAS are five times as likely to attempt suicide as the general population.

In 2008, both Alberta and B.C. put forth ten-year FASD action plans. When they concluded in 2018, in Alberta, they had developed 27 diagnostic clinics, with the capacity to see 900 people. We still have only five, and they see kids up to 19. The Alberta government’s stats are a 2-to-1 return on investment for every dollar invested in anything FASD-related.

I won’t go over — there isn’t time — the plan that was created in 2008. It’s very similar to Alberta. The one here in B.C. is a good template to work from. That would be one of my recommendations. Go back and look at that plan, because it was very well-thought-out. It was just put on the shelf.

Alaska is an interesting model for us. They have the same population as Vancouver Island. However, they have six clinics where we have one. They’ve recognized it’s an issue, have done so since the late ’90s. How do they fund it? A small tax of a couple of percent — I couldn’t find the exact amount — on the sale of all alcohol funds the six clinics and some of the best intervention programs in the States for elementary and secondary schools.

The last slide. I don’t know…. There’s a whole bunch of pictures of brains.

I wanted to end on a hopeful note that ethical approval has been sought and gained to do a broad study on adults with FASD. It’s based on an observation that as adults with ADHD age and mature, there is a dampening of the impulsivity. The resiliency of the brain kicks in, but much later.

The expectation is that with FAS…. We see it in our daughter. I see it in lots of the clients I work with. Instead of developing in the teens, there’s a burst around puberty of brain growth that corresponds to all the hormones. There is a similar sort of mechanism, we believe, that occurs in brains that have been affected, whether it’s by ADHD or FASD.

That’s hopeful that our job, then…. We redefine what we’re doing as trying to keep people safe. I know with our daughter, she’s like a chronically obnoxious teenager, and she’s 27. But she’s starting to cop on, starting to see she can’t take three courses, work full-time, and so on. She’s a bit more biddable now. So we see insight.

Diagnosis at any point in life is helpful. Support is always helpful. I work in the Integrated Court, and people with FASD are overrepresented there. But there is hope.

With that, I will conclude so I’m not holding you up.

N. Simons (Chair): Thank you very much. I’m really pleased that you came in and talked about FASD. We haven’t heard as much about fetal alcohol as we have some of the other neurodiverse characteristics, and I really appreciate your insight.

I’m going to look at that ten-year plan again, because it’s been mentioned. I think it was just a question…. It wasn’t so much its construction that was at issue. It was whether or not we had the ability to carry through on it, I guess, or the…. I shouldn’t say “ability,” but you know what I mean.

D. Gerry: Well, my plea is…. Our two will always be dependent, and when we’re not here, the…. I run parent support groups, and unfortunately, I’ve heard more than once that the adult with FAS is saying to the parent: “You know, Mom, when you go, I’m done. I’m going to commit suicide. There’s nothing here for us — right? We just don’t have the supports.” So that’s why I’m here. It’s because I want to pass the baton to somebody to look after our 27- and 29-year-olds, who will need lifelong support.

N. Simons (Chair): I know you speak for the other 29-year-olds who will need supports, with maybe no family to look after them.

D. Gerry: Well, that’s the difference, when you go to Integrated Court, between the ones who appear on the video link in the jumpsuits…

[1:10 p.m.]

N. Simons (Chair): Yeah, in handcuffs.

D. Gerry: …and the ones that are in the court. There’s somebody in the court there to support them.

N. Simons (Chair): Absolutely, I’ve been in there. I know what you’re talking about.

D. Gerry: I’m sure you have.

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

L. Throness: Yeah. I want to talk about diagnosis. If you have a broken leg, you can diagnose your broken leg very simply and clearly. It seems to be more of a difficult thing with FASD. You sort of diagnose it based on behaviours that you observe. Early diagnosis is better, right? Could you talk about that for a moment?

D. Gerry: Sure. Diagnosis is from the Greek: dia is through; gnosis is knowledge.

In a perfect world, it requires five specialists: speech and language; occupational therapy; psych, neuro-psych, what­ever; the social worker, who does all the grunt work and doesn’t get any of the credit; the doctor and sometimes the psychiatrist.

Right now maternal confirmation is required. FAS is a diagnosis by exclusion. It wasn’t a brain injury. It wasn’t this. It wasn’t that. When you sit around in those teams…. At this point, they’re testing each other. “Well, are you sure it’s not this or it’s not that?” However, the good news is epigenetics…. Have you heard of epigenetics?

L. Throness: I’ve heard the word.

D. Gerry: If you expose a pregnant female rat to the smell of artificial cherries and shock her at the same time…. When her offspring come along and you give them the smell of the cherries, they react as if they’ve been shocked — and the next generation too. So there is a part of our DNA that’s programmable by the environment and the alcohol programs. That’s very, very bad news because FAS is going to accumulate in the population.

The good news is, and that’s to your diagnosis question…. Within five, six, seven years, there’s going to be a saliva swab. Right now you get a pin prick and blood test before babies leave B.C. hospitals. There will be a saliva swab, we hope, that will pretty clearly define whether or not they were prenatally exposed. When that happens, we know that exercise…. We give a much different stimulate. The brain is resilient, and we’ll have much better results.

There are four or five different diagnostic codes. Canada is one of the most…. It excludes the highest statistical standard, but the world is coming to consensus with the World Health Organization.

N. Simons (Chair): It’s a very interesting area of discussion. I know that when we talk about neurodiverse special needs, sometimes stigma comes up. I think fetal alcohol and stigma often go too closely together.

Can you just talk about the challenges of addressing this and the importance of preventative programs?

D. Gerry: Statistically, 52 percent of pregnancies are unplanned, and 80 to 90 percent of women of child-bearing age in Canada consume alcohol. Why it’s only 4 percent and not 40 or 50 percent is probably because we’re not…. If we’re not looking for it, we can’t measure it. We can’t manage it.

Stigma is so corrosive. The expression we use…. It’s like 200 years ago. When somebody had epilepsy, it was sort of like: “You’re a terrible person. Take your child and stay in the closet.” As the ED of a FAS charity, it was very, very hard to get board members. People didn’t want to be involved, and fundraising was chronically difficult just because of that. In the international classification of diseases, the name is going to change from FAS to neurodevelopmental disorders.

When the term was first coined…. The two who came up with the first English language paper in ’73 broke every rule in medicine. You’re not supposed to name a condition after its ideology. Creutzfeldt-Jakob, autism. All of these things are named after somebody who discovered them. They broke the rule knowingly, thinking that if people knew it was preventable, then it would be helpful.

One of the two authors died very, very young, and it was his biggest professional regret that he had done this. What it really says is, “If you drink, you’re a fetus abuser. You do it deliberately. Shame on you, and shame on your kid,” and so on, and so forth. So he went to his grave with that cloud, knowing that…. If we’d just called it Smith and Jones disease, which are the names of the two authors, this would be a very different conversation today.

[1:15 p.m.]

N. Simons (Chair): That’s a fascinating…. That’s a very interesting story. It’ll help us remember your presentation. It’ll be in the forefront of our minds as we deliberate. Your participation here is much appreciated.

D. Gerry: Thank you for your time.

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

Thank you, committee members. We will move on to our next presenter, who is Mary Morris.

Welcome, Mary. Thanks for coming to the committee. You know what the lights all mean. The green one means you have two minutes, and then we’ll get into questions. Thank you very much. You have the floor.

MARY MORRIS

M. Morris: Thank you for the opportunity to speak today. I want to tell you about how hard it is to obtain services for a child with special needs.

I’m a single mother to two children, both of whom have significant disabilities. My son has autism spectrum disorder, attention deficit disorder and narcolepsy. His physical age is 21, but his developmental age is somewhere around 15. My daughter is severely autistic, non-verbal. She is developmentally delayed and also struggles with bipolar disorder. Physically, she is 17 years old, but developmentally, she is just two years old. She will always be just two years old.

I was the disability services manager at Royal Roads University from 2007 to 2010, and I worked for disability services at Camosun College from 2010 to 2011. From 2011 to 2013, I worked at a law firm that specialized in family law.

I have had to fight for my children’s special needs for 21 years. For the last 14 years, I’ve been doing it on my own. So I know a thing or two about the process, the system and being an advocate for your children. I don’t know everything, but I know a little. The one thing I can say with absolute certainty is that it should not be this hard.

It starts when your child is very young. You realize that something is not quite right. He has markedly different behaviours than his peers. She screams for hours or is utterly silent, with no in between.

First, you have to get past your own fear and denial and say out loud: “Something is very wrong with my child.” Then, in a lot of cases and from my own experience and from the many families I have helped along the way, you have to get past either your spouse or other significant family members being in denial. This can go on for years, often going through the courts, with one parent insisting there is nothing wrong with the child and the other parent standing firm in the belief that the child has special needs.

Often judges don’t know anything about autism or the special needs of children who can’t cope with a 50-50 custody arrangement. I spent over $90,000 of my own money, and then an even larger sum from legal aid, not only protecting my children from a parent in denial but also educating judges about autism and the special needs of children who have these kinds of neurological disorders.

In my case, my ex was able to use the court system as a weapon. Many of the things he did through the courts are now considered spousal abuse since the changes to family law in 2013 were put in place. However, many of the things he did and the loopholes he found are still being used in B.C. courts today, such as taking the same issue back to court every three to six months, even though there’s been no significant change in circumstance.

The abuser gets a new judge every time at court. This means that the new judge has to be educated all over again from the start. That takes, usually, three to four days of hearing time. Most judges will not seize themselves of the matter because of scheduling difficulties with getting to Victoria — most of the judges are coming from Vancouver — so this just adds to the problems.

[1:20 p.m.]

The abuser takes this tactic of bringing the case back again and again. Most judges will enforce the previous court order, but they always give the other partner a small token win. It may not be much, but they get a nudge, a little more of what they were asking for. There’s less therapy for the child. There’s less time given for the child to go to therapy or something like that. They’re able to, over time, take away from even final court orders that are made after trial.

Even after a decade of this going on, I was not able to get a judge to grant an order to cease vexatious litigation. It took me 12 years of litigation, which not once was instigated by myself, other than filing for divorce, for my abuser to give up and stop taking me to court. He currently owes me $50,000 in legal fees, of which $17,000 is payable directly to legal aid. There’s a warrant out for his arrest in regard to this matter for contempt of court.

What happens to the special needs children while abusers are able to get away with this court abuse is that the custodial parent fighting for their special needs gets distracted from the other advocation work that needs to be done for their child. The child loses out on even more services that they are not getting.

In my view, there should be a separate group of judges who hear cases regarding special needs children. These judges would be trained to understand the unique needs of special needs children and trained to spot and put an end to court system abuse by parents in denial of their children’s diagnosis.

The thing is that, statistically speaking, marriages of parents with special needs children end in divorce at a rate of over 80 percent. With one in 68 children now being diagnosed with autism, as well as the hundreds of other special needs a child might have, that’s an alarming number of divorces moving through the B.C. court system.

While a parent in denial not only wastes the court’s time, they can also cause a child to lose out on special programs and therapies being offered, often because court orders say that both parents have to agree. By the time the special needs supportive parent can get back into court to get a new ruling, the spot has already been given to the next child on the list whose both parents did agree. There are kids losing out on programs just because one parent is in absolute denial. In the end, it’s the child who loses, even though they have a parent fully advocating for them.

When it comes to advocating for your special needs child, the fight starts early. It’s a huge challenge, if not an outright fight, to get your child diagnosed in the first place. Family doctors send you to pediatricians. Pediatricians agree your child has special needs, but you only find out after waiting seven months for the appointment that they cannot make a diagnosis and have to refer you on.

I call that the system. It can be a year-long wait to get into the correct assessment system.

Even then, you have a problem because there’s a multidisciplinary team assessing your child. These teams often include laypeople — say, someone working at a preschool with your child — who don’t have the training to know what is or isn’t a neurological condition. If they say, “Well, I don’t see those symptoms in the child,” that negates all the opinions of the professionals. You’re left with nothing — no funding, no help, nothing.

You have to start the whole process again and get your child assessed again. I think sometimes the system is set up for that because it will weed out the parents who don’t have the strength to advocate for a second assessment. That doesn’t mean the child doesn’t need the services. They do. It’s just: how strong is the parent?

The few lucky children whose parents have enough fire in them to fight for a second diagnosis get what their children need. This was absolutely the case for both of my children and what I have directly seen from the families I volunteer with. It still seems to be the active assessment process — the practice of denial.

Once you fight your way through the medical assessment system and actually get a diagnosis, the funding gates open up. However, for children with autism over six, that’s just $500 a month. It’s not enough. The reason such little money is given, especially after age six, is because services such as speech therapy, one-to-one support, etc., are supposed to be provided by the school district. However, school district budgets have been slashed to the extent that they just aren’t able to provide as many services as they need, especially at the high school level.

I’m hoping that other parents have talked to you about what’s going on at the elementary levels. I’m just going to focus on high school. When my son reached high school, all his supports were stripped from him. He lost his one-to-one worker, his scribe and all his services were stripped. He was given a laptop with speech prediction software in it, and that was it.

[1:25 p.m.]

When I tried to fight for more services for him, I was told that we should be grateful for what he got because he has autism, and all the other students that needed support got nothing and that, if we fought harder, the only person to take services from would be the blind child at the school. Because apparently only autism kids and visually impaired children get services.

My daughter, when she became a teenager, started to develop symptoms of bipolar disorder, and there was nothing, no programs, to help her. She became so caught up in her mental illness that she could not leave her room for three months at a time. We couldn’t get in to a child psychiatrist. The wait-list was nine to 18 months. Through a lot of advocation, I got her seen in five months, but it still took quite a long time to get her cocktail arranged and everything.

I had to quit my job to take care of her. The only program we qualify for now is social assistance.

N. Simons (Chair): Thank you very much for sharing your experiences with us. As I’ve said to other presenters, they add a depth to our understanding of the issue beyond the technical and just the statistical kind of look at it. By participating in this process, I want to just say, you’re helping. I thank you for that.

We’ve heard from lots of parents and providers. Some of things you said, we’ve heard before. Some of them you’ve said in another way that has given us a new perspective. So thank you for taking the time to come here today and to present to this committee.

I’m going to call the next presenter to the desk, and that’s Kristen Sandborn. I’d like to welcome Kristen to the committee.

Thank you for coming today. You’ll have ten minutes for your presentation. The green light means you’re two minutes from the end. It doesn’t really make a lot of sense to me either, but it’s what I was taught when I first got here. The green means hurry up.

Thanks for coming. You have the floor.

KRISTEN SANDBORN

K. Sandborn: Thank you very much. My name is Kristen. I am a mother of three. I am here before you as a very, very burned-out parent.

Two of my three children have special needs. Both of them have different, unique diagnoses and different treatments. My youngest has an extremely rare channelopathy and mitochondrial disease. It includes intellectual disability, epilepsy, movement disorder, progressive medical mitochondrial decline — super rare, super challenging. My middle child has an official diagnosis of ADHD, OCD and dyslexia, and three psychiatrists have told us that he has undiagnosed autism. Unfortunately, in B.C., only a psychologist can diagnose autism.

We have found the disparity in their care to be heart-wrenching. A child with a proven genetic medical disorder is treated more seriously and with more attention and detail and time than a child with a serious mental health issue, even though, at this point, we find that the mental health issue is more life-threatening. When we go to the hospital for our youngest, he is always treated quickly, diligently and with respect. Our last visit with my middle child, we were left alone for ten hours without anyone checking on us — not a nurse, not a nurse’s aide, no one for ten hours of our 15 hours waiting in emergency.

The reason we had ended up in the hospital with him…. He was in such severe distress from all of his conditions that he had actually gone after his younger brother, the medically fragile one, with a knife, deciding that he was going to cut off his head. At that point, we were left alone for ten hours in the hospital with a child in severe distress.

[1:30 p.m.]

Two years ago we were sent to VICAN — I’m sure you’re all aware of VICAN — for an autism assessment. At VICAN, they determined that he was borderline autistic, but in the phone call they made to preschool, a teacher said she didn’t see the signs. Therefore, he was not diagnosed. The teacher that the doctor spoke to had met him once. She was an ECEA, not even a full early educator. She was an assistant educator, and she had met him once for two hours, in a class of 20. Based on her say-so, my son was not diagnosed, and therefore, we did not get the supports he so desperately needed.

That was at the end of his last year of preschool. Three weeks into kindergarten, they flagged him for autism. But unfortunately, we had already gotten the negative report. So it’s been a struggle.

When the special needs teacher did return — she just didn’t happen to be there the day the doctor called — she assured us…. She works with my younger one too. She has known our family for years, and she said: “One hundred percent, your son is on the spectrum.” She was shocked that they did not give him the diagnosis and has been in touch with them several times to say they’ve made a mistake.

On this last hospital stay, both of the Victoria General Hospital psychiatrists and the crisis counsellor said that Asher needed desperate reassessment. All three of them stated that he had autism. They told me that I should go anywhere but VICAN. VICAN is notorious for denying high-function diagnoses to kids. We’re still waiting on that.

When all of this started escalating two years ago, I was desperate for resources. I applied for the child and youth with special needs program through MCFD. I was rejected for both boys. There are three categories you have to fall into to get into the child and youth with special needs program. You need either an intellectual disability, an autism diagnosis or to fall under the At Home program.

Surely my youngest should have fallen under the intellectual disability criteria. I sent in all of his QA speech and OT reports, showing that he was significantly delayed. MCFD informed me that I would have to pay for a private psych-ed to prove that his IQ was under 70. I’m a single parent of three boys. I don’t have $3,000 to prove to the ministry that my child, indeed, had a disability.

When I was informed of that, I went to the social worker of Queen Alexandra and told her my dilemma, saying: “Clearly, he meets the criteria, but I just don’t have this money.” She was able to put him on a wait-list for a very select few spots that would do a psych-ed covered through QA. Not all the children in their early intervention program are able to access that. You’re quite lucky if you get a psych-ed covered by the QA program. We were lucky he got it covered. His IQ came out to be 36 — almost half of what the cut-off was for MCFD. I feel so privileged that we were able to have that assessment, and I feel terrible for the families that either don’t have the funds or don’t qualify for the very, very few spots of the funded psych-ed.

Once we had the psych-ed done, we did qualify for the child and youth with special needs program. Within a day of having our diagnosis, we sent in our paperwork and were contacted by a social worker. The social worker did come to the house. She gave us a folder on intellectual disability and said that she did not need to meet either one of my children, even the one that was on her caseload. She wasn’t interested in his diagnosis. She gave us the folder for intellectual disability and said we did not qualify for respite, even having two children with special needs. So it was disappointing, after all that effort, to qualify for a program that then turned around and said: “We have nothing for you.”

Six months later I got a call from Respitality, which is a program through the Cridge Centre. They offer a free night at a hotel or a gift that’s given by the community to parents of children with special needs. They called me and offered me a night in a hotel. I said: “Well, regretfully, I would love to take it, but I don’t qualify for respite.” To which the social worker at the Cridge said: “Yes, you do.”

[1:35 p.m.]

I was advised to call back to our CYSN’s supervisor and inquire about our eligibility. It turns out that I was eligible and was to be put on the wait-list. We had the CYSN come back to our house, meet our children and review the diagnosis of the one who qualified — his very rare medical condition. I was put on the wait-list but was told that likely my five-year-old would age out at 18 before we ever got any respite. That’s with two children with special needs, with only one qualifying for the CYSN program.

After all this, I did end up writing to the Premier. I wrote to four different ministers. I made phone calls. I finally went to the media. I had an interview with CHEK news in November, I think it was, about the lack of services for a family like mine and how few services there were for children who did not have an autism diagnosis.

Out of that media exposure, the people that were trying to help us got phone calls from the ministries. They were not happy phone calls. I got a phone call from the Ministry of Children and Family Development asking if…. They couldn’t provide respite, but they could provide foster care if I wanted to put my children into voluntary foster care. This would cost them more money than providing the services to my family, preventing the trauma of removing my children. Then the foster family would also qualify for respite every second weekend, which is actually what my job used to be — providing respite to foster families when the biological families are denied.

My response, of course, was no. I’m not putting my children in care. I am just asking for the services that we qualify for and have been denied. I’m not the most popular person around there.

Back to that recent hospital admission. We spent a week on pediatrics at VGH. We were released without any plan or any community support. Basically, their discharge plan was: “Lock up your knives.” Not much of a plan, in my opinion. Meanwhile, my youngest son Jonah’s disease is progressing, and now he’s having respiratory distress episodes. I’m balancing these two complicated children on my own.

When we were discharged, he was still significantly desta­bilized. It took Asher’s pediatrician, psychiatrist and psychologist demanding he receive in-patient care to get him finally admitted to the Jack Ledger program at QA, where he was admitted two weeks ago. I miss my son. I really wish we hadn’t gotten to this point, and I believe we wouldn’t have if we had been given the services that he should qualify for. I am really saddened that the system has failed us so spectacularly to get us to this point.

All of our care providers here have said that B.C. has to change our supports to needs-based instead of diagnosis-based. Alberta bases its supports in the community on a needs basis rather than a diagnosis basis.

N. Simons (Chair): I’m just going to interrupt. You can continue. We just won’t have time for questions if you do.

K. Sandborn: Okay. I didn’t realize I talked that long.

N. Simons (Chair): I have a question. Did you ever go to the Representative for Children and Youth?

K. Sandborn: That’s the one person I haven’t.

N. Simons (Chair): That office was set up specifically as an advocacy body for parents of children. It doesn’t matter what particular service they’re looking for. They may or may not be able to provide it. I’m not saying that they answer everything. But it just crossed my mind when you said you went to the four ministers.

Even before the ministers, sometimes people go to their local MLAs.

K. Sandborn: I did that — John Horgan.

N. Simons (Chair): He’s a local MLA.

K. Sandborn: He’s quite busy, even though he’s a family friend.

I actually did go to…. We put a service request in with MCFD, with protections. I said: “Look, I have a child who is undiagnosed autistic, with all these other mental health conditions. I have another child who is very medically fragile. I need help.”

They told me I was an appropriate parent, and they couldn’t help me because I was an appropriate parent.

[1:40 p.m.]

N. Simons (Chair): You were able and willing.

Members of the committee, have you got questions?

L. Throness: I’m so sorry to hear of the difficulties that you’ve undergone. Your efforts are heroic for your children.

I wanted to ask about something you didn’t get to finish. That was that Alberta bases its supports based on need and not diagnosis. Could you describe that a bit more?

K. Sandborn: I’m not a professional. This is what the psychologist at Ledger and the crisis counsellor with the mental health team at Victoria General Hospital have both said. It’s that we have fallen so behind the Alberta model — that it’s needs-based.

A child with high-functioning autism that does not require a lot of support won’t just automatically get a big chunk of support. Where a child, maybe, like my child that doesn’t have an autism diagnosis yet or has significant mental health needs and significant support needs, but because he doesn’t have the right diagnosis, doesn’t get the support here. He would get the support in Alberta, because it’s based on needs rather than just a diagnosis that could leave you anywhere on a spectrum of need.

That’s really where B.C. needs to go. It’s strongly be­lieved…. Our doctor very strongly believes that B.C. has fallen quite far behind Alberta, which is surprising, because I believe B.C. generally is a more progressive province. I feel like we’re failing these kids.

Most people assume that a single parent like me with kids, two of whom have significant special needs, would get some form of respite or behaviour intervention. Anything. I just look at them and go: “Oh, well, that would be lovely.”

I actually had one say: “Well, can’t you use your youngest’s funding to help your middle one?” I said: “What funding?” Right? There’s nothing. There’s no help.

R. Leonard: Quick question. You say you have three kids. How is your third one doing in this situation? Second question quickly is: are your kids in school?

K. Sandborn: My oldest is neurotypical. He’s actually exceptionally gifted, so quite smart. He’s a straight-A student, has a job, is in all sorts of sports and activities. He’s 13 years old. But this affects him, because most of my attention goes to his younger two brothers. He’s at Dunsmuir Middle School. He’s just finishing up there, and he’s about to go into high school.

Asher, my middle one, who has undiagnosed autism and all the mental health issues, is supposed to be in school, but he hasn’t been in three months. He’s refused school to the point where he will poop his pants not to go. He will scream and fight not to go. It’s too anxiety provoking. There’s too much light. There’s too much noise.

He’s dyslexic, so he can’t keep up. It’s just not a happy place for him, which is part of the reason he’s at Ledger as well. They’re trying to figure all those kinds of sensory things out, so that he can be in a school environment.

My youngest is just finishing up at preschool, and we’re just doing the transition meeting to kindergarten next week.

N. Simons (Chair): Thank you so much. As I’ve said before, it’s important for us to not only know the facts but hear the emotion behind the facts. You’ve done a really good job of presenting us with your situation.

I really recommend you call the representatives.

K. Sandborn: I will. Yeah. I called MCFD and asked for help, thinking that was the route to go, but like I said, appropriate parents….

N. Simons (Chair): Yes. That’s right. Well, thank you for what you do.

I’d like to call up to the desk Tia Krogstad.

You’re next on our list, and we welcome you to the committee. You have the floor.

TIA KROGSTAD

T. Krogstad: My name is Tia Krogstad. I am a single parent with an 11½-year-old son who has autism spectrum disorder and an educational assistant in the Saanich school district, as well as I have a processing disorder myself. I’ve been through the system myself.

I’m here to speak mainly as a parent who has struggled with the assessment process and as an EA who is dealing with a lot of challenges in our school classroom settings. I have classrooms where I have seven students with IEPs in a class of 18 students. Supporting them is a huge challenge, and it’s detrimental to their learning.

[1:45 p.m.]

My son is almost 12, and he didn’t get assessed formally with VICAN until he was in grade 5, which means he missed years of supports and funding because of the late diagnosis and access to funding.

He’s always had the spectrum traits, so we’ve always known that. He spent years at school with teachers asking for him to receive supports, but we have been on the list. He finally got his diagnosis. We were waylaid by a pediatrician who didn’t see him as needing to be flagged, so we had to go back into the system, which took an extra two or three years to receive the assessment.

I work with many students who can kind of get by. He gets by in school. That’s always been the…. He can kind of manage and hold it together with not as much support, so it’s hard for him to get noticed and given the full EA supports. Even though he has them in his class, he doesn’t have one, one-on-one. He’s got challenges in certain classes where he would need more support. He doesn’t have an EA in gym class, which he would need. That’s just how it ends up working out.

He needs extra support to go on a field trip. My mom or I have to go with him so that he can attend those if there’s not extra support, because it’s too much work for his class teacher. He’s missed out on opportunities for speech pathology in school and social groups, because they have offered them, but there’s not enough funding or assessments in place for him to get access to that in the school system.

The funding amount we are given is not enough to access all the supports a child can benefit from. I’m fortunate that my parents can help me with financial help, but not everyone has that resource. I’m very grateful for it, but my issue is that finding resources and funding available is incredibly challenging. With his diagnosis, we received a package of information and a quick meeting with the social worker.

It’s been two years, almost, and I am still struggling to find financial resources and different tools as a parent and an educator, because it’s really hard to piece supports together. It’s kind of like a…. All the resources are out there, but you have to keep looking and working really hard to find them. I’ve missed some funding and camps and supports because that’s part of the assessment piece that’s missing. When the diagnosis happens, you’re just kind of thrown into it. “Here’s the funding. You can figure it out.”

I think that the major issue that needs to be addressed with the government’s support or lack thereof for youth with ASD is where and how they can get help, funding and respite care, because everything is in more of a silo than in a cohesive resource. There’s no one website. You have to go through different agencies.

N. Simons (Chair): Tia, thank you for your testimony.

I look to my committee members to see if there are any questions.

L. Throness: You noted that as an EA, there are seven of 17 children in your class with IEPs, which is really a huge amount. Is that typical of elementary schools?

T. Krogstad: I’m in high school. So I have a lot of students with processing and anxiety, which is becoming more prevalent. A lot of youth with anxiety, which is a high level of diagnosis, end up in classes where they are lacking the skills to navigate those classrooms. They’re in busy, noisy spaces with peers that don’t understand their anxiety.

I’m seeing that they will put six or seven students with an IEP in one classroom with an EA, because at least there’s one extra person to help the teacher, instead of looking more at putting them in smaller groups and having more one-on-one opportunities. There are not enough EAs to provide one-on-one support.

My students with anxiety would really benefit from one-on-one support, but instead there’s a classroom teacher, and there’s myself. I’ve got children that can’t write. They can’t read. They have autism and behavioural issues. I’m managing to make sure that they’re staying in the class, and they’re connecting with their peers, and they’re feeling successful and supported, but a lot of them, I think, are feeling pretty lost.

L. Throness: And your son. How is your son doing? Is he in grade 7 now?

T. Krogstad: He’ll be in grade 7 in September. He’s finishing up grade 6.

He loves school. We are super lucky to have his IST teacher as his classroom teacher. She has worked above and beyond to be one of those people in his life that really knows he can succeed, because we’ve had years of teachers who just kind of pass him by and say: “He’s too much to work with. He’s too difficult to be in the class. We don’t know what to do with him.”

[1:50 p.m.]

It’s, finally, this year that he’s really having a support advocate as a teacher. He’ll have her next year, because they do two years, grades 6 and 7, in the same core classroom. He’s having a great…. He loves school. He has always loved school, but he has not been supported in the classroom with his challenges.

N. Simons (Chair): Thank you, Tia. Thank you for coming today. I always remind people, or I try to, that the Representative for Children and Youth’s office also has an advocacy function. Thank you for coming. It was most appreciated.

We’ll ask Marcus Pollard to come up and provide us with his insights to the committee.

As a reminder, we have a light system that will turn green when you have two minutes left out of your ten-minute presentation. You have the floor.

MARCUS POLLARD

M. Pollard: My son Nathaniel has just turned 16, and he has been in kind of a unique scenario. I thought I would just spell it out a bit. It started when Nathaniel put his hand through the window. Actually, no, it started when he bit his home interventionist, causing her to bleed like a stuck pig. I was putting frozen peas on her arm when Nathaniel started to smash himself against the glass door in our bedroom. That’s when it happened. His hand went right through one of the small panes, nicking a tendon.

I called emergency. We needed to get him to the hospital. There was blood everywhere, and most of it was his. I don’t drive, so the ambulance was our only option. Because he was violent, they had to wait for backup. Nathaniel and I were sitting on the couch on the porch, and I was trying to keep his hand up so that the blood wouldn’t be spurting out. He was calm now. I had given him an Ativan to try and relax him, but I think the enormity of what was happening was dawning on him. This was not like one of his other times.

The police announced themselves as they arrived. I told him it was all clear. As they came into the backyard, I greeted them calmly. I asked them their names and introduced them to Nathaniel. I’d heard enough tragic stories about kids with autism and police confrontations. My mind was working a mile a minute, trying to make sure I was covering all the angles. The two officers arrived before the ambulance did. So we just sat on the porch and chatted, continuing to build a rapport.

At one point, I asked the constable if they could actually help and clean up some of the glass that was on the floor. They were very helpful. It turned out that one of them had a relative with severe autism so had some familiarity with the scenario. Oh yes, my son is non-verbal and has autism. It went well, but really, it could just as well have been a complete disaster for us all.

I met my wife and her sister, who is a nurse, at the hospital, where we were welcomed by a family support worker of sorts, who found us a private waiting room. Within an hour or so, we were with a surgeon and figuring out, on the fly, how to proceed. It ended up being with Trish and me holding Nathaniel’s limbs, while his aunt Shelley worked as an ad hoc triage nurse. We got through it all right, but there was still very little separating us from complete disaster.

A few weeks later Trish and I were locked in our bedroom after another violent attack from our then 14-year-old, 180-pound son. We were listening to him smash his head on a table. Or it might have been a chair or the floor. We couldn’t go out and see for ourselves for fear of getting severely injured, while making it worse for him. We were literally and figuratively trapped. We had no options, no help, no support that could withstand the tsunami that our beautiful and funny boy had become.

We’d been told, on a few occasions, that the only solution was to drive him up to emergency and get him admitted. We were also told that there was a unit set up for kids or teens with severe mental breakdown. So that’s what we did. We waited for N to calm himself down and tire himself out, gave him a dose of Ativan and headed to the VGH.

Our previous visit had given us a little bit of an idea of what to expect. We saw the same family support worker, who found us a room while we waited. We saw a few more doctors and then waited and waited. Sometime before midnight, they found Nathaniel a room. It was a metal psych room on the pediatric floor. As one worker told me: “It’s where they put kids at risk of killing themselves or someone else.” He got some massive dosage of an antipsychotic to put him out, and then he and I were locked into this metal cage with two tiny, painfully uncomfortable beds. I surrendered all ligatures, anything remotely sharp and, of course, my phone.

[1:55 p.m.]

That lasted less than a day, as the other patients in the three-bedroom space were all young women. One of Nathaniel’s coping mechanisms is to ask for and be granted a toilet visit. He did this dozens of times, and his pants were down. There were young, at-risk women in the same room. It was a bad fit for everybody, but there was nowhere else for us to go. That’s kind of the hallmark of our journey.

They found us a room on the pediatric ward, where N could be quarantined. He was actually sandwiched between two rooms with young nursing mothers. He had a 24-hour security detail outside his door. His front wall was all glass, so he was essentially living in a fishbowl. Nurses would see him two to three times a day to check his vitals and administer meds, but he was a boy in a bubble. So again we waited. We camped out in the parents’ waiting room from about 8 a.m. till 10 p.m. every day. Sometimes we would do some shift work, but generally, we were there together.

Jeneece Place actually found a room for us so we could be closer. They could kick us out at any time if they needed it, which they did on occasion, but it was a great help. Most of the time we just lived up at the hospital. Trish went back to work, but our base was the VGH. We were nomads, essentially, but nothing changed for Nathaniel.

The hospital spoke of stabilization, but it was just meds administered by a psychiatrist who saw Nathaniel for probably 20 minutes, maybe half an hour, over a 60-day period. No therapy and zero physical activity. Even the social workers were at a loss.

It turned out the security guards became N’s people, learning his signs when others wouldn’t, talking to him, being friendly at least. Though the pediatric ward is set up with a schoolroom, there was no teacher, so there were no lessons. There was an ad hoc playroom, but there were no toys or anything made for a kid of Nathaniel’s age. A ward full of teenagers and no outlets for them.

It was probably a month before we were able to take him for a walk on the hospital grounds. The nurses were, for the most part, afraid of him and questioning why he was there, like we had somewhere else to be. There was no movement and no plans, no therapy, no socialization. We were waiting for a room at Ledger House at Queen Alexandra, waiting for it to open, but until that time, Nathaniel was in a holding pattern, becoming less socialized every day. It was a bad fit an in ill-equipped facility where kids like Nathaniel were not even considered, much less an afterthought.

After approximately 60 days there, there was a glimmer of hope. A space had opened up at Ledger House. He was their jam, we were told. Nathaniel was their type of kid. So we worked out a transition plan, complete with transfers from the hospital to Ledger — security details, ambulances. I’m sure there was less planning getting Julian Assange out of the embassy.

Once at Ledger, it took very little time to realize that they had no clue, literally. They had him booked into a special care unit, which is for their high-risk kids, with two other kids. But within a couple of days, they realized that that wasn’t going to work, so he was again on his own. They had to kick the other kids out. So he was on his own in a four-room space.

The staff were young but inexperienced for our type of kid. Again they were afraid of Nathaniel and spent most of their time just observing him behind a glass wall — no classes, no teaching, no lessons. The only intervention he received was from the outside professionals we hired and paid for.

We had to negotiate twice-daily visits to see him. No one was learning his signs. That seemed to be a hallmark again for Nathaniel. No one was learning his signs, so we were the only people who could communicate with him. Luckily, a couple of the hospital security detail came with him. They liked our boy. So it wasn’t a complete waste of time, a complete waste of government money, but it was very, very, very close.

Ledger has a 21-day time limit, so after three weeks, we were tossed back into the world, and the onus was on us to create a transition plan to make a soft landing for Nathaniel. With the help of his social worker, we heard about a group home of some sorts where high-behaviour kids were housed. This was symptomatic of every step in the process. We would hear a whisper about something, then track down the resource, set up a plan, find the funding and move forward. Nothing was easy, and we knew we were tracing steps that others had previously taken.

[2:00 p.m.]

We got N into the respite home for 14 days per month, and by Christmas, we had our boy back home, even if it was just for a few days at a time. With the help of our team — social worker, MCFD behavioural consultant, our behavioural consultant and a home interventionist, his OT — we cobbled together a plan to reintegrate Nathaniel into society.

I have more, but that’s green.

N. Simons (Chair): You can continue. You have about a minute left, and then we have five minutes for questions.

M. Pollard: Okay. I just have notes after this point. I just found out I was doing this today.

Through this whole process, Trish and I really got a chance to analyze what was wrong in the program, because we were essentially just sitting in the waiting room up at the hospital the whole time.

We need a facility for children and youth at risk, a stabilization. We need professionals in the hospital or in tertiary care. We need something like Ledger House that actually works to stabilize high-risk kids and reintegrate them into their families and community.

We need lots of stuff.

N. Simons (Chair): Thanks, Marcus. That was really good. You know what? It’s important for us to hear individual stories. I don’t know how you have the patience, or maybe you don’t. But you’re here, and things are better, maybe, than they were yesterday.

M. Pollard: Actually, I don’t know if you’d heard. Nathaniel goes to a school called Victor School, and we were part of the fight to keep Victor School or to take it out of the catchment program that they have. So I’ve had a lot of talks about Nathaniel in the last little while.

N. Simons (Chair): Did you ever use the advocacy service of the Representative for Children and Youth?

M. Pollard: I don’t think we did. Part of the thing with Nathaniel…. Once we got him up to the hospital, we were with Health, essentially. Again, because we were making all of our steps up as we went along, we weren’t exactly sure. My wife actually works for MCFD, but…. So no, we didn’t.

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

Ronna-Rae has a question.

R. Leonard: Thank you. I’m sure that…. I heard some humour in your presentation, and I guess that’s one of the best coping mechanisms for high-stress situations.

I may have gapped out for a minute. Was this a sudden onset, this change in behaviour with your son?

M. Pollard: He went, well, from being physically smaller, for one. He would have outbursts, but the outbursts were containable partially because he was smaller as well. But pretty much from grade 7 on, it started to escalate. As we are told, boys with autism going through puberty…. It can be just like dynamite. I think that’s what we saw.

R. Leonard: Okay. So you’re looking at…. When you talk about a place for stabilizing, you’re talking about probably that age group where there’s suddenly a significant increase in…. We’ve met lots of folks whose kids, as they’re growing, get different challenges along the way, but I think what we’re hearing today is probably one of the more extreme.

M. Pollard: Yeah. I mean, it’s extreme, but it’s not unique. We come across…. One thing that I did when we were stuck in the hospital was I started to kind of journal through Facebook. I didn’t want us to be hiding what was going on. I kind of wanted to be a little more open about it. Through that, I found a lot of parents who said: “We went through the same thing.” So it’s not uncommon. It’s rare, but it’s not uncommon.

L. Throness: From what I could tell, if I could summarize what you said, it’s that there’s no end of goodwill in the system and there are all sorts of people who are willing and wishing to help, but it’s not set up for a person with your son’s needs. Is that fair?

[2:05 p.m.]

M. Pollard: The nice guy in me would say yes. But up at the hospital, we got actual blowback from nurses, from the head nurse. When I say that people weren’t learning Nathaniel’s signs…. We actually printed up a sign dictionary. We had it up on his wall. The security guards would come, and they would learn it and kind of work it out with themselves. But the medical professionals seemed almost uninterested in that.

Again, where we were…. I don’t know if you’ve ever been up in the pediatric ward at the VGH. They have the psych ward, and it’s literally right next to the nursing mothers. There was one point where I was in the hallway, and I was looking at these walls. There was one door that had a young woman in it who had written “Please kill me” backwards on the door, and in the other door next to it was a 22-year-old woman nursing her baby. I thought that could be part of the problem: not only are we a bad fit, but the space itself is a ridiculous fit. It fits only by age, and that’s it.

When it comes to the well-meaningness, I’m not exactly sure. I don’t know if it’s because Nathaniel had a bit of a violent tag attached to him but….

L. Throness: But he’s coping now?

M. Pollard: He’s coping better. We got him into Victor. So we got him into a school, but he’s had — I’m sure you’ve heard about EA problems — five EAs this year and two different teachers. He’s been learning with ABA therapy forever. I don’t know if you guys are familiar with that. But now the schools are not using…. To get an EA, they’re not saying: “You have to be an ABA EA.” Essentially, every time he gets a new EA, somebody has to learn everything again.

He’s better. He’s a happy kid. It could even be just physiology. He could be getting out of his puberty. He’s better, but honestly, he’s better because of Trish and me, you know, and the people that we’ve hired, the team that we’ve put together. Whether, between the ministry or the health, they are fish out of water or….

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

M. Pollard: You don’t want to listen to me for another hour?

N. Simons (Chair): Actually, you’re entertaining to hear, in addition to being helpful to our committee. We appreciate your presentation very much.

M. Pollard: Excellent. If you guys ever need any information about us, just feel free. Thanks for having us.

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

We’re moving to our next presenter, and that is Judy Hoffman.

Welcome to our committee table. Welcome to the committee. Hi, Judy.

J. Hoffman: Hi.

N. Simons (Chair): How are you?

J. Hoffman: I’m okay, Nicholas.

N. Simons (Chair): Very good. Nice to see you.

Our timing is a little tight today, so we’re being pretty officious on that front. You have ten minutes, with two minutes of warning at the end. When the green light goes on, you have two minutes.

J. Hoffman: I had actually asked if I could fill in the last two time slots, but I guess everybody has flights out of here.

N. Simons (Chair): Yes, absolutely.

J. Hoffman: I’m going to be speaking about CLBC, and I thought there might be a few questions.

JUDY HOFFMAN

J. Hoffman: Good afternoon. My name is Judy Hoffman. I’m a community-living single parent with a 28-year-old son with significant multiple disabilities that require extensive supports. I have personal experience with a variety of assessment tools. My son is not currently receiving services from Community Living B.C. because of deficiencies associated with CLBC’s “Guide to Support Allocation” tool, also called the GSA. According to CLBC, the GSA is used to assess an individual’s current disability-related needs and to determine the specific assistance needed in ten key areas of daily life.

The GSA is not — I repeat, not — able to determine an individual’s disability-related need, nor can it identify the specific amount of assistance needed. Consequently, the GSA cannot be relied upon to determine an appropriate level of funding, especially for individuals with mental health issues, physical disabilities or complex care needs that are not easily captured by the GSA.

[2:10 p.m.]

The exceptional needs of those clients are flagged on the GSA but not uniformly funded due to CLBC’s reliance on the subjective judgment of analyst staff who have never even met the individuals.

The GSA is strictly a formula-based funding guide that loosely assigns a category to determine a fabricated, set funding level. It’s not a needs-based assessment tool that considers the current functioning of its clients. CLBC has no viable assessment.

I’m going to outline for you an actual scenario en­coun­tered by a 19-year-old youth requiring disability supports. The youth has severe cerebral palsy with a profound intellectual disability and lives with his mother. CLBC is contacted, and the youth is assessed using CLBC’s formula-based GSA tool. CLBC sets the total support funding for the youth at $27,000 per year.

This same youth contacts Health’s home and community care division and is assessed using Health’s needs-based, time-task analysis. Health’s total support funding is set at $150,000 per year for meeting this youth’s personal care needs only. That amount would be readily available to any qualifying adult in the province if they did not have a developmental disability.

How can that be possible? CLBC allocated zero funding for meeting the youth’s personal care needs that were flagged on the GSA as an area of exceptional need. Health determined that the youth’s extensive personal care needs required their maximum level of funding support. So $27,000 a year contrasted with $150,000 is starkly discriminatory.

Compare the outcome of these two types of assessments. CLBC’s formula-based assessment and interpretation had dire consequences for the youth: an abrupt, traumatizing removal from his family home and disruption of his entire life, including disruption to established, therapeutic physical programming. He experienced a 44-pound weight loss due to depression and atrophied muscles. Epilepsy that had been absent for over ten years was reactivated by sensory overload and stress. The result? An overall decline in physical and mental health, sadness and a substantially decreased quality of life.

Health’s needs-based assessment allowed the youth to live securely with family, reconnect with his community, resume physical activity and make gains in recovering lost skills. The result? Improved health and emotional well-being, happiness and increased quality of life.

Since 2010, with the signing of the Guidelines for Collaborative Service Delivery, CLBC is responsible for providing both community inclusion support and assistance with personal care needs. Health’s mandate only provides assistance for the personal care needs. The GSA tool was developed by CLBC in-house, loosely based on the British In Control self-assessment questionnaire. It is not standardized or validated outside of the scope of CLBC.

The GSA does not do what CLBC claims it does. CLBC has been pretending for 13 years that they are actually assessing the disability-related needs of their clients. CLBC has no comprehensive, individual assessment. What they have is a simple, multiple-choice, ten-area guide using a scale from one to five that could be completed in ten minutes. The scale rates: (1) independent, requires no supports; (2) intermittent support; (3) regular guidance; (4) needs ongoing support; and (5) full support needed. Now, if that’s all that can be ferreted out from an assessment, that’s not much information at all for this diverse group of individuals.

Recommendation 1 that I have is to invest in a comprehensive, proven, needs-based assessment tool such as the Supports Intensity Scale, or SIS, currently being used in several Canadian provinces, 20-plus U.S. states and internationally. This would improve the alignment between defined needs and funding. It would provide the transparency and consistency required to finally resolve much of the chaos seen in community living.

[2:15 p.m.]

Recommendation 2 would be to retain the GSA only as a self-assessment questionnaire for individual and family use to use as an outline to inform their personal support plan.

I’m needing to stress upon the committee that what I’ve described is a discriminatory, pervasive, systemic issue that demands a thorough independent investigation with system reforms established as soon as possible to prevent further risk and harm, as it is gravely affecting many community living individuals and their families.

Every level of government is aware of the issues I have presented here. Ministers and deputy ministers of social development, three CEOs of CLBC, CLBC’s entire complaint system, two advocates for service quality and the Representative for Children and Youth’s office plus countless MLAs know about the inadequate assessment funding issue which moves the systemic, chronic underfunding of community living individuals and their families into overt institutional oppression.

The entire CLBC service delivery model is based on a critically flawed tool, creating major problems that are wasting considerable tax dollars that could be better used for the essential services needed by adults with developmental disabilities and their families. It’s up to this committee now to address. I sincerely hope you will give this your utmost consideration. I’m available and would welcome further discussion on the matter.

Of note, last week Inclusion B.C. passed a strong resolution to advocate with strength and purpose to change CLBC’s current practice of marrying an individual’s funding to specific types of housing and support, because while CLBC seems to offer residential services that are suited to a person’s unique needs, in reality, housing arrangements are limited to funding allocated within an individual’s GSA, their assessment tool. This limits choice and control of housing and support, which is a fundamental right, a cornerstone of social justice and, I would add, directly violates the convention on the rights of people with disabilities.

N. Simons (Chair): Thank you very much, Judy. I know you’ve been an advocate for a long time. I remember talking to you a few times outside.

J. Hoffman: Yeah, I made a trip up to see you in Powell River. I follow what happens at the Legislature through Hansard, and many of you have had a great deal to say about community living over the years.

N. Simons (Chair): As you know, I’ve had my own disputes or, I guess, issues with the GSA and how, as you described it, it’s not a specifically very accurate tool, so to speak. Advocacy, going along with the tools that are currently being used, is essential.

While we are a committee that is focused on children and youth specifically, there are increased authorities provided to the Representative for Children and Youth’s office in terms of advocacy for young people after they age past 19.

J. Hoffman: I’m familiar with that. In my son’s particular case, that was implemented after he was snatched and detained illegally long term in a group home. By the time I got him out of the group home, he was over the age that he could be represented.

I’ve been in touch with the Representative for Children and Youth about the systemic nature of this, and they say that that’s not their mandate, which is troubling. I need to know: whose mandate is it? Who will look into the discrimination and the systemic problems?

N. Simons (Chair): I think, for that reason, we are very appreciative that you’ve brought the whole issue around the systemic nature of some of the deeply rooted problems that parents see.

J. Hoffman: It would be good to have a decent assessment in place. It’s wasting lives. It’s wasting the time of families, of the youth. They’re languishing on wait-lists, as many of you have said before. It really needs to be addressed — independent review.

N. Simons (Chair): Well, we are an independent committee. We thank you very much for your testimony today. It helps us in our deliberations.

[2:20 p.m.]

We look forward to releasing a report sometime in the fall. Thank you very much, Judy. I appreciate it.

Committee members, we are now going to call on Janis Hoffmann to give us her presentation as we continue our deliberations on our special project.

Janis, welcome to the desk. You’re a little bit far away, but I can see there is someone there. As you can see, there are lights on my table. Green will tell you there are two minutes left. You have the floor, and thanks for being here.

JANIS HOFFMANN

J. Hoffmann: My name is Janis Hoffmann. I’m founder of Parents for Safe Schools and Vancouver rep for the Citizens for Safe Technology.

My grandson, who is now 14 years old, has been diagnosed with a chronic health disability — EHS, electrohypersensitivity, also known as microwave sickness. This means that with the accumulative and prolonged exposure to microwave radiation emitting from wireless technology, he experiences severe headaches accompanied with vomiting, extreme fatigue, insomnia and night terrors.

It was in grade 2 when Tyler started coming home with severe headaches that corresponded with increasing fatigue and sleeping difficulties. The first few times, Tyler was asked to place his finger where it hurt, and he would touch the top of his head. But later, as the headaches increasingly became worse to the point of nausea, Tyler was unable to touch the pain, stating it was in the middle of his head.

Our family’s physician recommended Advil and Tylenol to alleviate the severe pain, but we knew there was something seriously wrong. We were discussing the problem with some parents on the school grounds and discovered a Wi-Fi router had been installed just the weeks before. Tyler’s pediatrician requested that Tyler return to school with the Wi-Fi transmitter turned off so he could start the process of elimination to see if the Wi-Fi router was giving Tyler headaches.

Our request to the Sooke school district was denied. We were told they couldn’t turn off the Wi-Fi even though there were no wireless devices for the children, because if they did, it would set a precedent. If they did it for us, they’d have to do it for everyone else. Tyler was unable to complete grade 2 with his friends, and we were dismissed from the Sooke school district.

For the next four years, Tyler shuffled around the Victoria and Saanich school districts and graduated into middle school, where we were assured there was only 25 percent coverage, only to discover the school has 100 percent coverage and is able to download on 30 laptops from a commercial Wi-Fi router three classrooms away. We were never informed about the FrontRow system emitting microwave radiation on another radio frequency and how the students were encouraged to bring their cell phones into the class.

As a temporary solution, Tyler was pulled out of his home­room and placed in a separate room downstairs. Tyler was really upset, frustrated and angry about being downstairs for five hours a day with no contact with any of his peers. He felt he’d been dumped downstairs and forgotten, left there to do his work on his own. He was frustrated that he could go a day or two without even one person checking on him to see how he was doing.

Imagine being 11 years old and your only social contact with your peers is in a school setting, but you are isolated in a room by yourself. Tyler entered and exited the school as quickly as possible, keeping his head down to avoid eye contact in fear of being questioned about the situation. Tyler expressed feelings of embarrassment, humiliation, loneliness, anxiety and was losing hope of ever finding a school where he could make friends.

As part of the school experience, students have an opportunity to meet socially and form friendships with others who have common interests. Tyler has a fundamental right to participate and socialize with his peer group and have the opportunity to build life skills that include communication, cooperation and teamsmanship. These fundamental components help to form a person into adulthood and extend long beyond school years. Tyler has yet to experience a sense of connectedness and school community that is so crucial for his academic and adult life.

Every attempt to attend school has resulted in another painful injury from the microwave radiation that blankets the inside of the school. Tyler should be provided with reasonable accommodation, affording him inclusion and dignity while building his self-esteem and personal growth. But sadly, he has only experienced the burden of isolation.

[2:25 p.m.]

Tyler is constantly facing barriers. He has been denied his right to move freely within his community. All means of transportation, accommodation, education, restaurants, hospitals, entertainment, etc., have been saturated with wireless technology, with no provisions put in place to accommodate the approximately 3 to 10 percent of Canadians that have been diagnosed with this environmental sensitivity.

Parents, teachers and students are frustrated. We have contacted the provincial health officer, Dr. Bonnie Henry; Minister of Health Adrian Dix; Deputy Minister of Health Stephen Brown; Minister of Education Rob Fleming; and Premier John Horgan requesting an official response to the findings of the U.S. national toxicology program expert panel and the supporting Ramazzini Institute, which concluded there is clear evidence of a carcinogenic activity and the association of cancer in the heart and the brain in cell phone radiation. Our requests have fallen on deaf ears.

If one cell phone causes cancer, then what happens when you enter a school where there are 25 cell phones, 25 Chrome­books downloading in just one classroom, with mul­tiple commercial Wi-Fi routers, whiteboards with overhead projectors, wireless audio systems throughout the school surrounded by cell towers, small cells, Wi-Fi hot spots? What are the levels of radiation our children are experiencing in the classrooms?

Who has put an exposure control plan in place, measuring the levels of radiation, educating students and staff on the safe use of wireless products as per the federally mandated safety manual? Who is identifying the risks, monitoring health and documenting the results?

It is a scientific fact that microwave radiation exposure causes biological effects, confirming the growing evidence of neurological effects and developmental delays with irreversible health effects, such as depression, suicide, violence, anxiety, autism, addiction, behavioural issues, heart episodes, ADD, ADHD, compromised ability to learn, headaches, nose- and earbleeds, brain fog, difficulty concentrating and cancer, as documented in over 28,000 peer-reviewed published studies by scientists and medical experts.

This information warrants the solicitation of a current letter re Wi-Fi safety from Dr. Bonnie Henry to ensure that the latest peer-reviewed studies and recommendations are being applied to make a sound decision regarding our children’s health and well-being.

Currently it is mandatory that our children will be ex­posed to microwave radiation from wireless technology with no way to shield themselves from this full-body radiation, much like the rats used in these studies. The school boards have wilfully dismissed all credible health information presented to them from qualified experts nationally and internationally, which emphasize the children’s heightened vulnerabilities and the need for precautionary measures to reduce exposure and risks from these harmful effects.

Canada agreed the precautionary principle would be implemented when an activity raises threats of harm to human health or the environment, even if some of the cause-and-effect relationships are not fully established scientifically. The precautionary principle shifts the burden of proof, insisting that those responsible for the activity must vouch for its harmlessness and be held responsible if the damage occurs.

The most current letter on file is dated 2011 from our school health officer, Dr. Stanwick, who was unable to provide us with any peer-reviewed studies stating the safety of microwave radiation. Dr. Stanwick instead has shifted the responsibility for professional oversight to the provincial health officer. Dr. Stanwick appears to have no educational background on the biological effects of RF radiation exposure. Yet he has endorsed the installation of a known 2B carcinogen — listed next to lead, DDT, methylmercury, chloroform and car exhaust — as an acceptable risk in our schools. It’s 2019, and we want to know: is cancer an acceptable risk too?

[2:30 p.m.]

Health is a provincial jurisdiction. The B.C. government has failed to do their due diligence and take immediate action to mitigate the risk by informing school boards throughout the province of the established health risk associated with long-term exposure to microwave radiation and by recommending the use of hard-wired connections to the Internet in our schools. For as little as a one-time cost of $500 U.S., every classroom would be provided with 40 Ethernet ports plus adaptors for their wireless devices, costing approximately $20 per child — a small price to pay compared to brain surgery, chemotherapy and radiation treatment, etc.

By refusing to implement precautionary principles and ignoring the growing body of clear evidence of cancer, the mandatory exposure in our school will ultimately be responsible for the greatest health scandal of our time.

N. Simons (Chair): Well, you timed that right to the ten minutes, I’ll tell you.

J. Hoffmann: I did.

N. Simons (Chair): Even with those interruptions from Telus. Well, thank you very much for your presentation, Janis.

I look to my colleagues for any questions.

L. Throness: I’m just wondering if your son…. I’m sorry to hear that he’s been experiencing these things. Has your son been diagnosed by a doctor?

J. Hoffmann: Yes. And a specialist.

L. Throness: As a result of the microwave sensitivity?

J. Hoffmann: Yeah. It’s my grandson. Thank you.

L. Throness: How old is he now?

J. Hoffmann: He’s 14.

L. Throness: Is he doing better in school?

J. Hoffmann: He’s not in school. We were forced to home-school. Actually, we were forced to sell our house. My daughter and I were forced to sell our two houses. I lived in mine for 42 years. They started putting the small cells in front of our house. I look after the kids. He started getting worse again, so we both sold our house, and we moved out to the Highlands, where there’s no…. Well, so far, so good. There’s very little service out there.

L. Throness: He’s in good health now?

J. Hoffmann: Right now he’s in good health, but he has no contact with peers. We can’t go anywhere. He can’t go to a restaurant, can’t go to the library. He can’t come downtown at all, ever. He hasn’t been downtown since he was seven years old.

This isn’t just one child. There are lots of them out there.

M. Stilwell (Deputy Chair): I’m just curious. When he is around the electromagnetic field and he starts getting the symptoms, how long before the symptoms reduce after being away from it? So if he were to come downtown and then go back out to where you live, how long would he be suffering with his symptoms?

J. Hoffmann: The thing with the microwave radiation is that it accumulates. So let’s say that on Monday, he goes to school, and he’s sort of okay by the end of the day. Tuesday, he’s not very good. Wednesday — bam — he’s out. He could be sick — he’s just rolling around in his bed, crying — for eight hours, before it finally is gone. Advil, Tylenol — no medications work at all. It’s got to work its way through, and he’s just got to get rid of it. Epsom salts baths, grounding — that’s about all that we can offer.

It’s not very nice at all. It’s not nice to watch, either. It just brings tears to your eyes. It’s bad.

N. Simons (Chair): Thank you very much for your presentation today, Janis. We appreciate it.

J. Hoffmann: The other thing that I would like to point out is the fact that it does affect children with autism and all those other things. Microwave radiation affects your developmental process.

Anyway. Okay. I’ll let you go.

N. Simons (Chair): Much appreciated. Thank you very much, Janis.

Next on our list, members…. We’re going to the second spot. It’s Nicole Zimmel.

Nicole, thanks for coming. Welcome to the table. You’re a ways away, but the little signal on my desk will give you a two-minute warning when it turns green. So that’s two minutes. Go ahead.

NICOLE ZIMMEL

N. Zimmel: First, I’d like to thank you for the opportunity to share my family’s story and my son’s story. My name is Nicole Zimmel. Me and my husband are the parents of three amazing human beings. Two of them are neurotypical, and our youngest was diagnosed with autism at 2½ years old, on February 2, 2009.

At the time of the diagnosis, I worked as a nurse and had an eight- and a five-year-old at home to care for as well. My son Owen is now 13 years old. He is taller than me and weighs 120 pounds. This may seem like a lot of extra information, but as I go on and talk, this will seem very pertinent.

[2:35 p.m.]

I want to describe my son to you, who I love more than anything, but I also want you to have a full picture of him. He was born at 30-weeks gestation and spent six weeks in the NICU here in Victoria. When we were given the green light to go home, we were invited to join the infant development program. Health care professionals, like nurses and speech therapists, came for weekly and monthly visits to our home for the first year because preemies are more likely to have challenges. They were there to provide early intervention for us.

When my son was ten months old, I heard for the first time: “I think your son has autism.” I remember this day very well. Sort of the timeline of our family…. I remember the day before that. I talk about life before that day and life after that day. It was very life-changing for us. Even as a health care provider, I never actually had heard about autism at nursing school, and I have never even discussed it at work. I only knew what I had seen on a documentary five years earlier.

At the time of my son’s diagnosis, the yearly allotment was $26,000, and even with that, my husband and I spent $20,000 of our own money to get him the therapy that he needed that first year. Soon after, it was announced that the funding would be decreased to $22,000, and after the age of six, it would go down to $6,000. By the time my son was six years old, we had spent $100,000 trying to care for my son.

At this point, my son spoke, and he was toilet-trained. Once we started school, we couldn’t financially or emotionally continue with the at-home therapy. We had two other children who needed us, so we started to redirect our funds and where our money went, and that was to educate the school staff.

I also just right now want to give you a small picture of my son. Autism affects my son in many ways, and today he is non-verbal. He has a severe sleep disorder. He sleeps four hours in a day. He has seizures. He’s a flight risk. His anxiety and OCD cause him to not be toilet-trained at this time because he can’t listen to his body. He is aggressive due to his anxiety. He picks at his skin so bad that he has huge holes in his face and arms. He can wash his face so many times a day that his face is rubbed raw.

I’m sure many of you are shocked when I tell you that my son attends full-time school, with a service dog, in a regular public school. As I have heard many people talk here today about being pushed out of the public school system, I can tell you we have experienced that as well. But we do have resources available to us, and we hired a lawyer.

My husband and I have also provided funds and experts to train the public school staff. This includes administration, teachers and EAs, not only about my son’s particular needs but also about general policies regarding flight risk, communication and challenging behaviours. We figure from kindergarten to grade 7 today, we have spent $80,000 in educating our staff members. At even one school, we have introduced and partially funded a sensory room instead of an isolation room to be accessed by the whole entire school.

It is probably no shock to hear that the $6,000 a year does not cover the costs for my son. We also access the At Home program, but we still come up very short. When my son was registered for kindergarten, the school district sat me down and showed me that the Ministry of Education gave them $19,000 a year for my son. My son is a one-to-one. He is never left alone, and $19,000 clearly doesn’t even cover the cost of the EAs. They told us then that we would have to financially contribute to meet his needs. I have to say that we actually haven’t been able to do that, and we’ve seen a lot of regression, even with those amounts.

I want you to hear about the financial challenges, but I really want you to hear about the lack of mental health care for youth with autism in Victoria. Since the age of five, our pediatrician has tried to refer Owen to a psychiatrist who is experienced with youth with autism. There were none in Victoria, so she requested, through the Ministry of Health, for Owen to access care at Children’s Hospital in Vancouver. He was denied twice.

When my son was nine, he started to experience the side effects of puberty and untreated anxiety. His aggression towards us and his siblings and staff increased, and at the age of nine, my son was in crisis, which meant that our whole family was in crisis. We experienced reactive and triage mental health care. We were going from one crisis to the next with no care.

[2:40 p.m.]

We were told that he needed to go to the developmentally delayed mental health team, which was new to Victoria and funded through the Ministry of Children and Families. So we needed to get our social worker to sign off. But in five years, she had never met my family, never met my son and was literally just a two-minute car ride from our house.

This is actually not abnormal. I’ve been told by every social worker that that’s normal. But when we went to go try and get him the help that he needed, it was the summertime. We needed to get the principal to sign off, and school didn’t start for six weeks. And that was it. There was no discussion. That was it. We tried to email and go over her head. We got an email from her supervisor saying: “Don’t email me again.”

We were being choked, kicked, hit and bitten. We were losing staff and in danger of not being welcomed back to school in September. By the time we got into the DDMHT, it was six months of crisis.

Just here right now, I want to stop and take a second to say that I have heard other people speaking here today say that they have heard that their social worker said that in order to get the care that they needed, they had to say that they were going to give their child up. At this point, we were told to do the same, which we did. I mean, we didn’t give him up, but we said that we would. That’s how we were told that we would get the help that we need — by saying those words.

My son’s anxiety increased. We lost staff. We spent thousands of dollars trying to deal with this on our own. As a nurse, I had a really hard time understanding why, just because we were his family — of a young child — it was okay for us to be subjected to violence.

After getting into the program, we learned that at nine years old, Owen was actually too young for the program. He had to be 14 years old in order to be approved for funding by the Ministry of Children and Families. Although the DDMHT told us that his aggression was anxiety related, he could only be in crisis to access the program, and he would not have continued, consistent mental health care.

To recap, my son, who received proactive health care as a preemie through the infant development program, intensive behavioural therapy, every six months was seen by a neurologist because of his seizures and a dentist just because he had teeth, could not access consistent mental health care. Once we were released and he had another crisis, we had to get another referral from his GP. Then there was a two- to three-month wait to get in.

Meanwhile, we were straining family, staff and school relationships. Since the age of nine, we have had to do this process three times. In fact, on Friday, I have another GP appointment to start this process all over again. Let’s not forget that he is still 13 years old and still is not old enough for this program.

Also, I just want to mention, too, that for the last couple of years, we have not actually been able to access the DDMHT during the summertime, because they close to focus on youth substance abuse. I actually don’t expect to be seen until October.

In closing, I want you to hear the emotional and financial stress this puts on a family. My husband often says we forget that we have two other children. Last month illustrates this best, when our middle child had his appendix removed, and through the pathology, we had been told that he’d actually been suffering for two years. Yes, before you ask, he did complain, but it wasn’t a big enough fire.

We’re doing our best. Often we wonder how other families are coping — single parents; parents with challenges of their own, or not even a mortgage to go back on, to take a second mortgage on; or if they’re living in more isolated parts of B.C.

Today, if you could leave here hearing one thing, I would really like you to hear that the process of accessing mental health for diverse children is just not adequate, and it’s not equal.

N. Simons (Chair): You’ve finished closest to the ten minutes that anyone has. You were very succinct. You were very descriptive in your presentation.

I just want to thank you so much for taking this opportunity. As a middle child, I understand that issue. We’ve heard from other parents who have talked about the challenge in the family with all the attention being focused in one area.

As well, I’d like to thank you for recognizing that you’re speaking on behalf of other parents — parents with means, parents without means, parents with support, parents with­out support.

[2:45 p.m.]

We’ve heard and we’ve seen that it’s unique to every family. The challenges are unique to every family. You’ve highlighted some very interesting issues so far that we hadn’t quite heard before. It’s been very helpful. Thank you.

I look to my colleagues for any questions. Laurie usually has one, so Laurie, go ahead.

L. Throness: Just an overwhelming burden that you carry. It’s amazing.

I wanted to ask about him now. You say he’s going to school full-time. Does he continue to exhibit aggressive behaviour, or is that moderating as he gets older?

N. Zimmel: I’d say it’s like a roller-coaster. It just changes from day to day. It changes for how he’s feeling. He’s non-verbal, so we don’t know if something else is bugging him. It could be his way of communicating but also could be his anxiety.

It is day to day, but for the most part, it is controlled. We have specific procedures and policies and structure. His life is very structured. It’s school, home, horseback riding, hiking, and that’s about it.

N. Simons (Chair): Thank you, Nicole.

Ronna Rae has got a question.

R. Leonard: You’ve given us a lot of detail, so I have a little bit of a picture. One thing you said is that he sleeps four hours a night. There are 24 hours in a day, and most people need a lot more sleep. How do you as a family handle this?

N. Zimmel: It is really, really exhausting. It has affected our physical health. I have had shingles. My husband has had shingles. I’ve had parts of my body removed. It is very, very difficult. You just keep going, and we keep trying different medications, but it is very limited, because the medications cause more seizures. So he is a complicated case. If we weren’t in the Saanich school district, we’d probably be going to Victor School, but there isn’t that option in Saanich.

N. Simons (Chair): So it’s still catchment area, is it, for Victor School?

N. Zimmel: Pretty much, yeah. We do want him to be where he is going to live.

N. Simons (Chair): Yeah. I just want to say that you did convey the emotional impact and the financial impact. Both of those form part of our greater understanding, and hopefully, you feel that this is a positive step by testifying. We are going to be making recommendations to government as an independent committee. I really want to take this opportunity to thank you on behalf of all of us. Thank you very much.

We’re now going to hear from Tristan Sonntag.

Welcome to the committee, and thank you for coming. You have ten minutes.

ASPIES ON MARS

T. Sonntag: Will do. Hello, everyone, and thank you.

First of all, I want to acknowledge that we are on the lands of the Lekwungen peoples and recognize the endless work we all must do to respect our Indigenous peoples. I would like to thank all members of the Legislative Assembly for the opportunity to present today.

British Columbia is full of opportunities. British Columbia is full of equality. British Columbia is full of acceptance. However, British Columbia is a work in progress. Society is always evolving, and so should our government.

Currently government is not doing enough to protect people with disabilities in British Columbia, especially autistic people. We end up getting the short end of the stick. From disability assistance that can’t meet up with the costs of living here to the continuing practice of isolation rooms to the lack of regard for the mental health of autistic people to even funding and supports for queer autistic individuals, British Columbia is truly behind the times. We at Aspies on Mars believe in “Change you can count on for a better B.C.” We’re looking to take British Columbia there.

I come from a middle-class family. My aunt raised me for most of my childhood. I went to school. I enjoyed school very much. I had an okay childhood, but the way the school system treated me was like I was an object — an object that could be stowed away, expendable, less than.

The first school board I was in, New Westminster, used the practice of isolation rooms. I wasn’t the first person to receive this abuse, and I will not be the last child to experience this in British Columbia. Combine this with my experience of high school and no wonder I’m defensive and skeptical about people — and sometimes the government.

I received supports through the autism funding unit until I aged out. Immediately, my counselling ran out. We paid for my counselling out of pocket for the next three years, and we continue to do so at this point.

[2:50 p.m.]

The trust between my counsellor and me was a relationship built on trust. I have been seeing her for about seven years now. Finding a counsellor that you can trust, especially for folks on the autism spectrum, is challenging. Once you find the right counsellor, it’s best to stick with it, in my experience.

Community Living British Columbia currently does not fund private counselling, which I believe shows a lack of due care to autistic individuals and our mental health system — expendable, less than.

Persons with disabilities assistance is helpful for those who can’t work or need time to figure out what to do in their lives. But it’s also useful for people with disabilities to start a business, like I have. It’s definitely not enough to live on.

Persons with disabilities are unique in each of their challenges, yet persevere in perpetuity. People with disabilities are a testament to the challenges that are overcome as a result of courageousness and perseverance. Persons with disabilities come in many shapes and forms, including autistic individuals like myself. I have many friends on the spectrum that need support, whether it’s being themselves or integrating with the community. My advocacy role plays a big part in making British Columbia a better place for all of us.

I would like to see coordination between the Ministry of Children and Family Development and the Ministry of Social Development and Poverty Reduction to implement a seamless transition for children aging out of the autism funding unit to CLBC’s personalized supports initiative program.

Policies should be implemented to ensure that the transition is as seamless and automatic as possible. This would benefit me and others like myself who need to access disability support services in the private sector. Families should not have to worry about losing access to services. Families should not have to worry about their loved ones being hampered from being themselves.

Autistic individuals have a higher chance of experiencing gender dysphoria or same-sex attraction than the normal population. Autistic individuals need counselling and other supports to continue for as long as they are needed.

We believe that sexual orientation and gender identity should be protected under the new legislation that’s being proposed, called the Sexual Orientation and Gender Identity Protection Act, to include home care rights for queer autistic people and people with other disabilities in British Columbia. This will ensure that gay, lesbian, bi and trans people aren’t denied access to a supportive community that helps them navigate the world and become the person they really are.

We also believe that making Community Living British Columbia offer the same services as the autism funding unit allows adults who have aged out of such unit to continue receiving services without interruption.

I would like to see British Columbia legally index income assistance to the rate of inflation to eliminate the devaluation of the money of disabled British Columbians, thereby enforcing economic security for the most vulnerable. This is similar to what Rachel Notley, the former Premier of Alberta, did with AISH, Alberta’s version of persons with disability assistance.

I would also like to see the School Act be amended to ban the practice of isolation rooms so that British Columbia’s children with disabilities aren’t left alone or treated as expendable or as less than anyone else in the system.

In conclusion, thank you for listening to my presentation. Thank you for listening to the voices of people like myself, who have a disability that these services have an impact on.

My disability may make things difficult for me, but I’d rather put up a fight for the rights and treatment we all deserve than stay silent. I’d rather speak up than sit on the sidelines. And I’d rather have honesty and integrity in everything I do than take shortcuts for my own gain.

I wish that all members of Legislative Assembly take the promise that they put forth to their constituents and act on some of the measures here to deliver a “change you can count on for a better B.C.”

N. Simons (Chair): Well done. A very succinct and well-delivered presentation. I really appreciate it. So do my colleagues.

Tristan, I think the Deputy has a question for you.

T. Sonntag: Yes, hello.

M. Stilwell (Deputy Chair): I’m just wondering when the next podcast is.

T. Sonntag: Oh, really. Thanks.

N. Simons (Chair): Tell us about your podcast, Tristan.

T. Sonntag: Sure. Aspies on Mars is a podcast of autism, for autism. We have people from various different types of abilities. Last episode…. We did an episode on, I think it was, romance, relationships and love.

[2:55 p.m.]

That was filmed on May 17, on IDAHOT, at the Anvil Centre in New Westminster, where they had a play, run by the Community Living Society and Real Talk, called Romance, Relationships and Rights. That was our last episode, and we talked with a wide array of people with different types of disabilities about romance and relationships.

N. Simons (Chair): Sounds like an important topic to have discussed. That’s excellent. Can you just make sure we all know how to find it?

T. Sonntag: Yeah, sure. Go to aspiesonmars.com. That’s where you’ll find it. There’s also a link on the bottom of the website where you’ll click YouTube. You can watch our episodes there. We’re hoping to release on iTunes in the near future. I’m looking forward to it.

L. Throness: I just wanted to comment that you seem like an extremely capable person to me, and I wanted to ask about the “on Mars” bit. Have you read Oliver Sacks’s book An Anthropologist on Mars? Is that where the title comes from?

T. Sonntag: No, it comes from the note that it’s all about creating…. It’s differentiating autistic people from others, in terms of the lack — the communication barrier. For autistic people, we tend to have some difficulties socializing with others, and that’s what it comes from. It comes from the fact that autistic people can have trouble, and we speak a different language than the rest of the community.

M. Stilwell (Deputy Chair): Thanks, Tristan. You spoke about CLBC and the personal supports initiative. I’m just wondering: do you receive any funding? Did you transfer into CLBC? Or were you too high functioning and not receiving those fundings, so all the support you get now is PWD and the employment that you mentioned?

T. Sonntag: I do receive PSI services, yes.

N. Simons (Chair): You’re speaking for a lot of people who may not have had the courage or the inclination or even know about this committee. I hope that when you speak, not just on your own behalf…. You know you’re speaking for a lot of people who may not have the opportunity to speak, and that’s always something to be commended. So I really appreciate you speaking not just for the constituent that we’re speaking about mostly but the queer, the bi, the trans. Their voice also needs to be included in this discussion.

For that reason and for other reasons — for bringing us a really good presentation — I’d like to thank you on behalf of the committee.

T. Sonntag: Thank you, hon. Members.

N. Simons (Chair): We’re going to just take a one-and-a-half minute recess.

The committee recessed from 2:57 p.m. to 3:01 p.m.

[N. Simons in the chair.]

N. Simons (Chair): Thank you very much, committee members. We’re back in whatever the opposite of in recess is — un-recess. We have on the phone Saydie Koral.

We’re very pleased that you’ve taken the opportunity to present to the committee. You have ten minutes, and I’ll let you begin whenever you feel ready.

S. Koral: Okay. Thank you.

N. Simons (Chair): Thanks, Saydie.

SAYDIE KORAL

S. Koral: My name is Saydie Koral, and I’m a legal guardian of my three stepsiblings that all have different special needs. They were all recently diagnosed autistic. Two of them are suspected FASD. All of them have oppositional defiant disorder. Two of them are diagnosed ADHD. That’s just kind of the beginning of where we’re at.

My kids’ ages range from seven, five and four years old. I got them when I was 23 years old. Their birth parents got into heavy substance abuse, and my kids were put into foster care for two years before coming to me. I was dealing with the ministry — kind of a little bit with the foster family that had my kids.

Before coming to me, I was open with my social worker on helping me adopt my kids potentially. Though I wasn’t given any more information, as we hadn’t gone to trial yet or anything, my social worker and team leader both knew my intentions.

Then when we went to court, the birth parents lost their rights in court, as they were using drugs. So it was me self-represented against the ministry. The judge awarded me guardianship, as I am in the best interests of the children, since I’ve been the consistent person in their life since birth for all three of them.

After I gained guardianship, the ministry…. I kind of brought it up to them. “Okay. So what’s the next step? Where do I go from here? What resources do I have? How do we go about the adoption?” My social worker said: “Oh, we’re not helping you with the adoption. We’ll be done with you within six months. You didn’t make your application against the ministry, so yeah, we’re done with you in six months. You’re kind of on your own for finding out what you’re eligible for — your resources, that sort of stuff.”

I had two weeks before my kids moved in with me, which, I guess, is unheard of. Usually, it’s a three-month transition period from foster home to new house. I had two weeks to take a leave of absence from my work, find a bigger place than a basement suite, get rental assistance, get on income assistance, get child tax and all of that stuff all by myself. I did it and learned a lot about myself in the process.

Then the struggles of my children’s appointments and assessments and everything came afterwards. That itself was a struggle, just finding time management between appointments and trying to live life and all that sort of stuff.

[3:05 p.m.]

Then after two years of not hearing a single peep from the birth parents, the female birth parent took me to court and was granted an access order, overnight, to my children — only one of my kids even knew who she was — based on the fact that the judge felt it was in the best interests of my children to know where they came from, regardless of the female birth surrogate’s suicide attempt history, drug history, all that stuff, because she was claiming she was clean.

That’s been a whole new battle in itself because my kids have been going to these visits and have documented behaviours, where my oldest — who’s the only one who even knows who she is — has been banging his head against my car window, crying, screaming that he doesn’t understand what’s going on and that he doesn’t want to go back and live with her. I’m supposed to leave my kids at her grandmother’s place in Summerland, and we live a half hour away.

That’s been my battle ever since. I’ve been trying to adopt my kids, trying to turn my guardianship into adoption. But I’m being told that because I’m not blood, I have to pay around $15,000 for children that were already awarded to me. I don’t have that, currently, so I’m trying to figure out other options on how I can make this happen.

My social worker told me that I was able to register them under different names. I could change their names. So I did. So my kids identify as different names than their birth certificates. But after going to Service Canada, figuring out that you cannot change your kids’ names unless you adopt them as such or if you’re blood, again, I’m at a dead end and don’t know what to do there.

It’s been kind of a struggle, more so on the adoption side than my kids having special needs. I’ve actually kind of figured a way to maneuver that with my kids, since I’ve had them since the beginning. We’ve all grown together. We’ve worked together. Me and my physiotherapist, occupational therapist, behaviour consultant, behaviour interventionists, pediatricians, doctors — we’ve all worked as a team together to grow with that.

My main struggle has been trying to figure out legal permanency for my children so that they can have a stable environment and not have to worry about their future and inconsistencies in their original birth surrogates and how all scattered all over the place they are. That’s pretty much been my struggle there.

I’m not really sure where else to go from here. I feel like I’m kind of rambling a little bit.

N. Simons (Chair): No worries. It’s always helpful for us to have an opportunity to ask questions, too. You can continue, but if you want me to interject with questions, I’m fine with that as well.

S. Koral: Well, I mean, does that just take more time for questions, then?

N. Simons (Chair): Yeah. We can ask some questions.

S. Koral: Okay.

N. Simons (Chair): I’m just wondering, Saydie. Have you had the opportunity to contact any advocacy like the Representative for Children and Youth?

S. Koral: Yes. I was talking to the Children and Youth Representative, and her hands were kind of tied. I believe I talked to — Sherry, I believe her name is. She was extremely helpful, and she was awesome. But her hands were pretty much tied. She connected me with a few resources, saying: “You know, if your kids are experiencing this much trauma and PTSD behaviour, you need to make calls to the ministry’s screening.” So I was doing that, and I was having everything documented there.

Then she said: “Worst-case scenario, your last thing would be bringing up the ministry for review and reporting it.” So I did that. I brought the team leader and my social worker under review in a complaint, saying that they withheld information from me, knowing my intentions. And it didn’t go anywhere, which was super discouraging because I have shown up since day one and have gotten absolutely nowhere. It’s been just the hardest fight you can possibly imagine, trying to get what I was promised and then having it ripped away from you.

N. Simons (Chair): Could I ask…? When you went to court, and the minute you said you went against MCFD, were they hoping that you would…?

S. Koral: Pass out.

N. Simons (Chair): I’m not quite sure. Why didn’t they…? They didn’t support you looking after your stepsiblings?

S. Koral: No. Their reasons were that they thought I was too young, which I respect. I was only 23, taking on three kids with unknown special needs because the birth family, the female surrogate, used drugs heavily through all three pregnancies. Her drugs of choice were meth and GHB. So my younger two are heavily affected by that, as well as prescription medications that she was abusing.

[3:10 p.m.]

They didn’t think that I understood the task that I was taking on. However, here I am, four years later, doing it and rocking it — and no regrets stepping up for my kids whatsoever. This is what I was meant to do. I was also meant to be adopting my kids, like I was promised.

N. Simons (Chair): Thank you for that answer.

L. Throness: My compliments to you on your courage and fortitude in taking on this task. I wanted to ask about services for your children. Obviously, all three have pretty significant special needs. How have you found the system in dealing with them as far as help goes for their neurodiverse needs?

S. Koral: My kids all have access to autism funding, and that’s been amazing. We get a lot of resources using that funding. My kids are also…. We worked with Starbright learning centre, and all of our therapists from there, since the beginning. They’ve been super supportive of me.

I think that after four years now, I’ve done so much trial and error and footwork on my own, it’s like I know how to commute around the system a little bit and find where I need to go, and I have those people that have been supporting me there. It’s been a struggle for sure, but I’ve found that the autism funding — that’s the only one I know of right now that I’m eligible for — has definitely helped a lot.

N. Simons (Chair): Thanks, Saydie. The transition, the two-week pre-placement visits — what did they consist of? I’m just curious.

S. Koral: How it was explained to me by the foster mom and even the social workers when we were in court is that, generally, children get a three-month grace transition period from foster home to new home. Basically, you start off with a visit every week just to kind of get the kids used to their new environment — that sort of stuff, whatnot. It takes over three months before they’re fully transitioned.

This was around Christmastime, too, that my kids were going to be moving in with me. The social worker felt that because of my history with the kids and them already knowing me and being familiar, they didn’t need three months, which I understand — my kids are familiar with me — but I needed three months. I needed three months to find a place. I needed three months to have that time to get prepared and do everything the right way. Instead, it was so rushed, and it was such a hard process all by myself trying to get everything done. I’m proud to say that I did it, but it was probably the hardest two and a half weeks I’ve ever had to go through.

N. Simons (Chair): Wow. It does sound like it would have been. That’s pretty intense.

S. Koral: And all by myself.

N. Simons (Chair): Well done. Well done, I must say. That’s quite the task. I would also, besides the representative…. I would suggest you go back to the representative again to follow up, but also make sure your member of the Legislature is aware of your battle. Perhaps they might be able to help guide.

S. Koral: Yeah. Cheryl is the representative for our local MLA. She has been amazing, getting in touch with me and doing her best for finding resources and any other loopholes that might help me.

The only thing we’ve come across is that I literally have to change the law to basically be a part of the adoption. I guess, from what I’m told, you either pay around $5,000 per child for a private adoption, or if you share DNA, it’s straight across the board. You don’t have to pay a cent. So I literally am going to have to fight somehow against our judicial system to change the law, because even though I don’t share the same DNA, I am the only family that has been there consistently since my kids have been born. I have stepped up, and I have sacrificed for this family, so I should be treated as such.

N. Simons (Chair): Who does Cheryl work for? Just curious.

S. Koral: Ben Stewart.

N. Simons (Chair): Okay. Thank you very much. Well, I’m really glad you took the time to speak to us, because this is the kind of information that will help us in our deliberations.

[3:15 p.m.]

We’ll, hopefully, be able to come up with some recommendations, including your particular situation. The law doesn’t, I think, intend to exclude you in this particular case, but that’s the law. So we have to figure something out there maybe.

Thank you for taking the time. We really appreciate it.

S. Koral: Thank you very much for allowing me. Can I add just one more thing?

N. Simons (Chair): Yes.

S. Koral: I think it would be very helpful for the ministry to do a second overview for conflict of interest. I thought it was very curious that my team leader and my social worker both went to school with and grew up with my kids’ biological father, so it just leads me to think that they were withholding information from me because of personal reasons they had against the father. That shouldn’t ever be a thing.

N. Simons (Chair): It shouldn’t be even a suspicion. So we’re not going to make any conclusion on that. It’s always best to avoid even the perception of that.

S. Koral: Exactly.

N. Simons (Chair): Thanks for raising that.

S. Koral: Thank you so much, everybody. Have a great day.

N. Simons (Chair): You too. Bye for now, then.

Okay, committee members. I don’t think we need to recess. We’ll continue with our next presentation, which is Shawna Adams.

Shawna, welcome to the committee room — the very large committee room. Luckily, we have like a lighthouse light at the end of my desk. When you see a signal, you’re getting close to shore. The green light will mean you have two minutes, and then we’ll have questions. So go right ahead.

SHAWNA ADAMS

S. Adams: Sounds good. I think you have a handout. You don’t need to refer to it while I’m talking. I just wanted to be able to leave you with something that, hopefully, will spark some thoughts afterwards. I apologize because I’m going to refer to my notes to make sure I stay focused and on time.

Good afternoon. My name is Shawna Adams. I didn’t need my notes for that. My background includes applied chemistry and biotechnology. I have a master’s in business administration, and I am a certified parent educator from the Adler School of Psychology. This diverse background allows me a unique perspective, from various angles, of the current system for children and youth with neurodiverse special needs.

Most importantly, I am the proud mother of two youth with autism. I’d like to tell you a little about my family for context and then share with you some of the experiences we have had through the child and youth system in B.C., from birth through to adult services.

Anthony is my oldest child and is now 21. Anthony’s diagnoses include autism, Tourette syndrome and attention deficit hyperactivity disorder, more commonly known as ADHD.

Katrina is my youngest child and turns 19 in a few months. Her diagnosis is autism, and she is predominantly non-verbal.

Both of my children are autistic. They fit the criteria for Kanner’s autism, not commonly referenced these days with the more inclusive term of autism spectrum disorders. This is important to note because it has been verified multiple times as a criterion for participation in genetic and family studies on autism in which we actively participate.

My purpose today is focused on two specific points of concern — the transition points in our current system of support for children and youth with neurodiverse special needs and the challenges in available programming supports. By the end of our time together, I’d like you to be thinking about consistency, education and navigation.

Though both of my children are autistic, they are quite diverse from one another. My son Anthony may not immediately be identified by someone in the community as someone with autism, as he manages some social interactions in the community with practised skill. Though not well skilled at a variety of social norms — Anthony may seem weird or odd or eccentric upon a first meeting — he has developed some ability to adapt in the community with coaching and structured guidelines to support him, though Anthony will never be entirely independent.

My daughter Katrina has the physical ability to speak. We know this from her earlier years when she was far more verbal. Both children look typical, which can be a challenge for people to understand what is wrong with them when they do not behave as expected.

At the age of two, Katrina had the benefit of a spot with the autism early intervention program at Queen Alexandra Centre for Children’s Health. Most years of Katrina’s time at QA were spent screaming and crying because she had no skill with language that allowed her to convey her thoughts and emotions another way.

[3:20 p.m.]

Through the consistent support of 20 hours a week of intervention, Katrina developed many skills, including basic language, supported by the use of some sign language. These were improving with Katrina’s communication skills at an impressive rate. Then it was time for elementary school, because Katrina had turned six.

I’d like to clarify that both my children had huge gains from the autism early intervention program at QA. This program, in that form, no longer exists due to a funding change, and it is an absolute tragedy. Consistency, education, navigation.

As I mentioned, Katrina had developed some basic language and was on an exciting trajectory of learning growth at the age of six, when she transitioned from early intervention to school-age funding. At the cessation of the higher-level of funding, Katrina struggled for lack of consistency with her language and behavioural development.

Katrina is now 18 and is predominantly non-verbal. She has far less language now than she did at the age of six. As a result, the opportunities for Katrina beyond school are drastically limited, and our system is meant to support her at a higher cost than if she had continued on the trajectory she was on at the age of six, when she transitioned away from early intervention and the higher level of funding and support.

Though my children are in many ways drastically different, their experiences are similar, though Katrina’s are easier to delineate in a short presentation. Both children are now designated, from the time they turned 18, as persons with disabilities. The process of application changed between the time of their applications, and for Katrina, it was electronic, but the system itself has some serious challenges.

I’d like to clarify that in both instances, I was told that their applications were the most complete that had ever been seen, and I was thanked for my diligence. I have an MBA. Most persons with disabilities and/or their families or support persons do not. I have spoken with many others trying to navigate the application process, and it can take two years or more to complete it because it is so complex. This is for those who are even aware that they may qualify for such a designation. There is a prevalence of marginalized persons with a need to navigate this system, even just to identify and apply for this support.

This is an extremely significant issue I would like to draw your attention to. The application itself is nearly impossible. But navigating to it and through it is a distinct need that has to be addressed. I dare say too few persons who may qualify for the PWD designation are aware or have the wherewithal to complete the process. I cannot imagine being the person applying for the designation due to my disability and trying to navigate this application on my own.

I would like to clarify that those I have dealt with throughout the application process — both times — have been competent and kind. This is not meant as a criticism of their performance, merely that their role is insufficient to support the population in need of support.

This draws attention to the ongoing challenge, too, of the age of 18 for the application to PWD, but the age of 19 is the age for initiating a personal representation agreement. I am responsible for my daughter’s finances and all else, but we cannot sign a legal agreement to this effect until she is 19 years of age. This is one example of the confusion that ensues as a result of the split between 18 and 19 years of age and with whom to find support during that transition.

In addition to this confusion is the frustration of transition for funding from the Ministry of Children and Family Development to Community Living British Columbia. Though all applications have been completed and meetings have taken place for the requests for service, I am told that we will not be informed of the funding provided to support my daughter until she has actually turned 19. This means that there will be a complete lack of consistency at the time that she turns 19, because we are unable to plan for any supports and services before her birthday of September 1 this year.

The school year and programs will have already begun before we have any idea what we will be able to put in place to meet my daughter’s needs. The frustration of this is beyond words to describe and, again, highlights the need for consistency, education and navigation. The programs available to my daughter with higher-support needs are far outstripped by those available to my son, who is far more social. I am grateful for the opportunities for my son, but I grieve for the lack of opportunities of support for my daughter as she enters adulthood.

[3:25 p.m.]

Being the caregiver of a youth or child with neurodiverse special needs can be taxing, heartbreaking, heartwarming and wonderful. There is an urgent requirement for support of these caregivers and these children and youth to provide education and navigation through a system that can be more. But even just to help identify the existing resources can be the biggest challenge of all — and a hand with the overwhelm that is inevitable.

We will never be enough. There is always more we can be doing and something we didn’t know about that would help — consistency, education, navigation.

Thank you for your time. Please let me know what questions you have in order that I can clarify.

N. Simons (Chair): Thank you so much for a very succinct presentation. Well said.

We have, already, a question from the Deputy.

M. Stilwell (Deputy Chair): Thank you, Shawna, for sharing your story. Many of your words ring true for me, and sometimes I felt like you were speaking for me, as a mother with a child on the spectrum, as well, who is just going through the transition process and has just done the PWD application. I say that because I was also the former Minister of Social Development, and I improved the application.

N. Simons (Chair): I was going to tell her that if you didn’t. Don’t worry. I was going to tell her.

M. Stilwell (Deputy Chair): I know that it’s still difficult, and there was still more that I wanted to do when I was there. Obviously, we’ve had a change in government. My hope is that the current minister is still looking at ways that he can improve it to make it easier, to make it less stressful. Because I can tell you. You got kudos for the way you were able to fill it out and have it very succinct.

I tried my very best. It took me a long time, and I helped develop it. It goes to show that if I was struggling, the people…. As I was doing it, I was constantly thinking about the people who don’t have the resources, the wherewithal, the education and the supports to do it. I hope that that is still something that is being looked at strongly within the ministry.

My question is…. Your children — they’ve now been designated PWD. Are they still living at home? Did they transition to CLBC? Are they getting supports from CLBC as well?

S. Adams: My son has transitioned. He’s 21. He is receiving some supports from CLBC. I’m not going to say that it’s not challenging, but he is receiving some support.

My daughter doesn’t turn 19 until September 1. We have a meeting coming up in a week, which the team has insisted on to ask more questions about what we can expect and what we can plan for. But we have been told that there will be no more information provided to us, already, before we have the meeting — that we will have no information provided until after she turns 19.

I do know that there is another avenue, for those who have heard about it and know how to contact, to provide advocacy in order to try and meet those needs, but that is like the unicorn. How do you catch a unicorn? Well, first you’ve got to find out if it exists.

I’m pleased, so far, with the receptive nature of the person that we have at CLBC. I believe they have heard what we have said. I know what she has included in the application for supports for my daughter, but I can’t actually do anything with that, because it might not even be as of her birthday, we hear. It could be much later. September may come and go, and she’s sort of left in the wind.

M. Stilwell (Deputy Chair): Did you have the benefit of a STADD navigator as she was transitioning? STADD naviga­tors have been around for a couple of years now.

S. Adams: No. I had heard that there had been a navigator position. My understanding had been that it wasn’t easy to access, and I wasn’t sure if it was still around.

That is something that I’m very interested in. I have offered, with the counsellor, for instance, that if she has other families who are challenged, if there’s something I can do, I will help. But other than being here today, that’s really about the best I can do.

I was president of the parent advisory committee at the elementary school at one point, and that’s how I ended up hearing some people’s stories — how they were taken advantage of by different people in the system. It’s not necessarily the system, at times. Sometimes it can be the people. But this discussion is about the system itself and how we can do better.

Does that answer your question?

[3:30 p.m.]

M. Stilwell (Deputy Chair): Yup.

R. Leonard: I want to thank you for smiling. In that moment, you really shared why and how you’re able to endure through the challenges that you have had in raising your children. For us sitting here, we’re hearing a lot of the trials and tribulations, and it’s really nice to see the why. I really appreciate it. Thank you.

S. Adams: Thank you. I can say that we have had a lot of trials and tribulation. There have been many challenges. But we generally use humour, and we try to educate ourselves. We’ve been very fortunate to make connections with some skilled and knowledgable people that help us navigate, but we are not the norm. I know that, and that’s what I’d like to see change.

N. Simons (Chair): Shawna, I’m just wondering. Have you ever spoken to the Advocate for Service Quality?

S. Adams: No.

N. Simons (Chair): That’s a position that not everybody knows about, but I’m going to give you the contact information. I’ll put it on the record right now. It’s ASQ@gov.bc.ca.

Their predominant focus is on services — adults with developmental disabilities, teens with developmental disabilities who are almost adults, teens with special needs, family members and others who support a person with a developmental disability. The office is out of MCFD, but it’s dealing partly with the transition. Then there’s the Representative for Children and Youth, of course, who you probably have had some contact with.

I would just say, to you and to others, that as much as we recognize, because we’ve set up this particular study…. We recognize there are places that need to be improved. In the meantime, until we make our recommendations, which will all be unanimously supported by government…. That’s a joke. It’s a hope.

S. Adams: It’s okay. I caught it.

N. Simons (Chair): Okay, good.

We do have these offices that may or may not be able to guide you a little bit in the direction and maybe some information you’ll learn that you didn’t know before, so just in the meantime.

And yeah, thank you for also acknowledging that people do try hard in the system, and they’re not always successful at getting what they want for families they work with.

S. Adams: They do, and there have been many professionals that have done a lot of really good things off the side of their desk. But the challenge is that then the role that they’re meant to fulfil gets bogged down too. Sort of half doing something out of the kindness of your heart ends up creating a shortage one way or another, and it means that it’s not consistent, which is so crucial in this.

N. Simons (Chair): That was one of your three words.

S. Adams: It was. Yes.

I do appreciate, and I thank you for the opportunity. I think that the study is really important, and that’s the first step. So thank you very much for the opportunity.

N. Simons (Chair): Thank you.

All right, committee members. We will continue. We have Sandra Goth, who has arrived and who will now give us a presentation. She’s not on your list, you might notice.

However, the time is available, and we are happy to have you. We will possibly ask questions afterwards. Go ahead, Sandra.

SANDRA GOTH

S. Goth: I presented to the Victoria school board a couple of months ago. I only just learned of this meeting last night, and I have spent all day working. I’m a nursing student. So I’ve spent all day working in the hospital.

This may not be specific to this, but I know it definitely reads to….

N. Simons (Chair): We’re mostly friendly, so you can go ahead.

S. Goth: Okay. ADHD is a neurological, often-inherited condition that you are born with. The DSM-5 defines ADHD as having a predominantly hyperactive-impulsive or inattention presentation or a combination of both, which interfere with development. Children with ADHD are prone to impulsive and risk-taking behaviour, with an inability to see the potential consequences of their actions. To prevent injury and social disturbances, these children require strict schedules, consistent supervision and an ability to remove themselves from social situations safely.

Imagine for a minute that every sound in this room is a distraction. The person next to you, who is uncomfortable in their chair and moving a little bit, is prominent in your mind, just as prominent as the other person typing and clicking on a computer. There are also the changes in lighting as cars go by and the fact that your feet don’t quite reach the floor.

[3:35 p.m.]

All of this is in the forefront of your mind as you are trying with every ounce of who you are to pay attention and retain the information being provided, knowing that if you act out, wiggle too much or lose the plot, you will be called out and punished in front of all of your peers.

Then you have a thought or you see a bug crawling on the wall or even remember that the sweater you are wearing is the one with the sleeves that are just that much too tight. With that, you have completely lost focus of what is being said. It will be at this point that the person in the front of the room has asked a question and is looking at you for an answer. But you don’t know the question because the room is too loud and the bug on the wall is bright green and your sweater doesn’t fit right in the arms.

You tell them about the bug, and you are told you are wrong. So you lash out. You are angry with yourself for not knowing what is going on because you have been told to pay attention, but you can’t. You can’t turn off the white noise.

You are anxious of your peers making fun of you, and you are ashamed that you can’t be like everyone else. You know you are different, but you have no supports in learning, despite those differences. Then you are labelled as “that kid” — the one with behavioural issues who is overtly talkative, who is sent to the principal’s office often, who other parents see as the bad kid or who is in need of much more discipline. Even though you are doing the best you can, you just can’t prioritize your focus.

Now imagine you are that child’s parent. There are no resources available for you to support your child’s learning. You are so overwhelmed because you know the battles your child is facing, and you don’t know where to find the help they need.

My name is Sandra Goth, and I am an only parent of two children with ADHD who are now 13 and 15. Their father has been gone since 2008. He also has ADHD. This neurological condition has granted our family many challenges and an abundance of energy. However, the worst part is the isolation associated with the stigma. Throughout the years, we have faced outcasting, discrimination, othering and blatant disregard from both peers and professionals.

Watching my children be ostracized from play groups, birthday parties, daycares, school functions and other social events became the norm from very early ages. I have lost jobs and friends, been told my children cannot attend certain events or organizations because they require too much supervision, considered a burden to those in charge.

Doctors are unwilling to make definitive diagnoses of ADHD prior to children starting school, leaving the re­spon­sibility of recognizing, diagnosing and designating to teachers, who may or may not be educated about ADHD and its complicated behavioural issues.

Becoming my children’s strongest advocate was thrust upon me. My battle for accommodations and IEP has been long and unforgiving. I had to hunt down outside sources and agree to testing and diagnosis of learning disabilities — disabilities I feel would not have been so prominent had they received accommodations, IEPs and early interventions when they were first diagnosed.

I also had to go to my own MLA to get my child’s first psych-education testing done because the school refused to put him on the list for educational testing prior to grade 5, even though, in grade 3, he was put in a behavioural classroom. I pushed, fought and demanded access to programs specific to their needs. In middle school and high school, I still fight for their access. It is exhausting and overwhelming to feel that if you are not ready to fight, you are essentially giving up on your children.

I implore you to hold Rob Fleming to his promise which he made when he was going for election — to bring ADHD as a stand-alone designation for IEPs. Knowing that ADHD children may never achieve a full grade 12 education due to ignorance, stigma and stereotyping is unacceptable to me. Teachers, families and students alike need the supports and early intervention that access to IEPs for ADHD will provide.

N. Simons (Chair): Thank you very much. Thank you for taking time out of your, probably, hectic world.

S. Goth: Very busy.

N. Simons (Chair): You know, that gives a face to an issue for us. That’s helpful in our deliberations.

I wonder, Laurie, if you have a question.

L. Throness: Your children have had access to some programs or none at all?

[3:40 p.m.]

S. Goth: For my eldest, in grade 2, we tried to get him an IEP or something. The principal at that school told us that he wasn’t disabled enough to be granted anything. He was diagnosed with ADHD, in the 95th percentile, in kindergarten. I hunted for a place that would accept him and provide him with additional supports. We moved him to Braefoot Elementary School. It had a behavioural program for kids that were, essentially, trouble in the classroom. I moved my kids to that school. We would wake up at 5:30 in the morning so that they could get to school on time and I could get to work.

Through that behavioural program and that principal’s mindset at that school — who was very open to pushing for kids to get some supports — we got him an IEP. That allowed him to be in a classroom with ten students, one teacher and an EA for the entirety of elementary school. Then, in grade 4, I went to my MLA to get him psych-ed testing because the school wasn’t able to put him on the list. I got kind of backdoored in through pushing my elbows out.

Through his psych-ed testing and my advocacy, we got him into what was the Islands program at Cedar Hill. That was a program that had a teacher and an EA and ten students in it. Since the change in our system, the Islands program has been shut down. So my son spent the entirety of middle school in one classroom with one teacher and one EA that he knew and I knew, for the consistency of that. He managed to make it through middle school, kind of by the skin of his teeth, but he did it. This year was the last year that that program was open. It’s now gone.

He is now at Spectrum high school, where they have an independent learning program that he does in there with a teacher who’s been teaching that for a number of years. But he’s now lost EA support for his other classes, so for any of his extracurriculars — mechanics or his trade stuff or his ability to take arts — he doesn’t have any supports in those classrooms currently. We’re not sure whether or not he’s going to be able to continue with those. Because of the lack of EA support in there, he might not finish grade 12.

N. Simons (Chair): Thanks, Sandra.

Well, on that less than positive note….

Oh, Ronna-Rae has a positive note.

R. Leonard: Thank you for your presentation. I just wanted to let you know that I have a very good friend who has had ADHD throughout his life and has been one of the most successful people I’ve known in the world. I’m not sure how far he got in his education either.

People find success where they feel that they’re supported and have learned resiliency. It sounds like you’re raising your kids just in a fine way. Thank you very much, and I hope you take heart in your children’s every little success that they have along the way, because you’re helping them have those successes.

S. Goth: Thank you for that. My best friend is a tax consultant, and she has severe ADHD. We spend a lot of time talking about this. I don’t have ADHD, but a number of my family members do, and a number of my close friends do. I tend to attract them. Thank you for that. I appreciate it.

N. Simons (Chair): Members, guests, presenters and those listening, thank you very much. We have a lot to deliberate on. We have a full day tomorrow in Surrey.

With that, I move adjournment and have, thusly, adjourned.

The committee adjourned at 3:43 p.m.