The committee met at 8:02 a.m.

[N. Simons in the chair.]

N. Simons (Chair): Good morning, everyone. Good morning, committee members and guests. It’s nice to see you here. I’d like to welcome everyone to the Select Standing Committee on Children and Youth — day 3 of three for this week on getting briefings to inform our review of services to children with special needs.

It’s really a pleasure to have Leanne Dospital here, whose name I came across many times in my time — not just in opposition. It’s nice to have you here, and I’m looking forward to hearing your presentation and the questions my colleagues might have.

Without further ado, I thought maybe we’d just let you start.

Briefings on Children and Youth
with Neurodiverse Special Needs

OFFICE OF THE
ADVOCATE FOR SERVICE QUALITY

L. Dospital: Okay, thank you.

Well, first of all, thank you for the invitation and the opportunity to provide a briefing about the current assessment and eligibility framework for children and youth with special needs. I would also like to thank the committee for their decision to undertake this special project.

Before I tell you about what I’ve heard, I would like to first acknowledge that we’re meeting today on the traditional territories of the Lkwungen-speaking peoples of the Songhees and Esquimalt Nations. Many thanks for their gracious hospitality.

I had forwarded a link to my most recent annual report, which provides more details about the Office of the Advocate for Service Quality’s responsibilities, but I’d want to include a few highlights here.

The advocate was established in 1992 to provide support to adults with developmental disabilities, who were moving out of institutions, and their families. Over the past 27 years, the role of the advocate has shifted, in part, because there are more people with an intellectual and developmental disability, or IDD. Their needs are more complex, and there has been a change in the disability population. For example, more people with autism and FASD.

The advocate helps government, including Community Living B.C., to better support youth with special needs transitioning to adulthood, adults with IDD and their families. The advocate’s mandate expanded in 2009 to include youth with special needs who are transitioning into adulthood.

[8:05 a.m.]

I was appointed by an OIC in April 2016 and report directly to the Minister of Social Development and Poverty Reduction. The advocate is a two-person office that provides information, advice and referrals, works collaboratively to help solve problems, conducts impartial reviews and identifies and raises awareness of systemic challenges.

In 2017-18, the advocate received 271 requests for help. The issues being reported to the advocate include access to health and mental health services, consent and decision-making, youth transitioning to adult services, trust and communication with government and community agencies, aging parents, rural and remote access and access to services for Indigenous youth and adults.

The committee asked that I provide detailed information on the areas identified in their project scope. The information I will share is based on what I and my office have heard in calls from family members, cases where we have become involved, meetings and information from community and government partners, conferences and my own observations.

Most often my office is called upon because there is a problem or a complaint. So it is within this context that I will share what I have heard. My knowledge is strongest in the adult world, however. But I have been examining the children’s world in an effort to better understand the experiences and perspectives of the people with IDD and their families as they navigate the system.

I’m especially interested in the correlation between raising a child with special needs and parental mental health that MCFD described during the January 21 meeting of this committee. By the time a parent starts navigating the adult system, they have spent 19 years advocating for their child. Many describe the experience as emotionally exhausting and full of uncertainty about how their child will be helped and who to trust.

A key part of my role has been to connect people and organizations. It is in this spirit of connecting that I will make some suggestions about other people and organizations that the committee may wish to consider learning from.

For project area 1, which is examining pathways to identification and entry — including parental recognition, developmental monitoring and referrals — parental recognition is a challenge for a couple reasons. One, it requires the parent to recognize that something is different about their child’s development.

I have heard that parents are often overwhelmed and exhausted, and they may not have the knowledge or the ability to recognize that their child is developing differently. Families have described their experience as feeling all alone and confused about where to turn.

Despite systems trying to focus on the early years, it is still incumbent upon the parent to identify a problem, seek help and advocate for their child. Before school age, there is no mandated developmental monitoring, unless the parent seeks help. Even when the parent seeks help, they may face barriers like wait-lists.

Secondly, it is important to understand that parents may not readily seek supports due to stigma. I have heard that it is very hard to say that you think your child has special needs. Given that a parent must admit to alcohol use during pregnancy for FASD to be diagnosed, it is understandable that these parents may not report, given the potential stigma and shame attached to this admission.

For project area 2, reviewing the types and uses of assessments — including diagnostic and functional and how these are used to determine eligibility for funding and services — I have heard that more holistic and interdisciplinary assessments are warranted in complex cases. I have also heard that functional assessments better capture a person’s situation and needs and that relying on a single professional — for example, a psychologist — is limiting and may ignore important aspects of vulnerability.

By focusing on the functioning of a person rather than the diagnosis, the person will remain at the centre of the assessment, rather than be defined by their diagnosis. It is common for a parent or a service provider to cite an assessment from when the young adult was a child that said: “They have the IQ of a three-year-old child.”

[8:10 a.m.]

The parents may continue to refer to their young adult child as only having the ability of a three-year-old, which does not acknowledge the person’s learning and adapting and may limit that person’s independence and decision-making ability.

It is striking — the variety of assessments needed for a person to (1) get a diagnosis and (2) get supports and services. Given the number and variety, it is not clear whether the purpose of an assessment is to fulfil a system’s requirement or a person’s needs.

Yesterday the committee asked about the use of the GSA, or the guide to service allocation, that CLBC uses to determine a person’s current disability-related need. This imperfect tool is completed by CLBC facilitators and local offices around the province. In CLBC’s Resource Allocation Practice Guide, a facilitator is guided to use their professional judgment to select the level that best represents a person’s current support need.

They consider ten areas of day-to-day living — for example, making day-to-day decisions like what to eat and when to go to bed. Then they assign a numerical level to a person’s disability-related need in each of the ten areas and produce an overall score. It is this score that CLBC uses to determine what services a person may be eligible for.

You heard from Seonag yesterday that the GSA is a guide, not prescriptive, and an attempt to get an understanding of the person’s support needs. It is also a key tool that determines whether a person will get funding for services or not. For example, a parent contacted my office, saying that their son, who has Down syndrome, was scored at a level 3. The highest level is a level 5. He and his family had spent a year planning with CLBC, only to be told he would receive the basic respite funding at $230 a month and no funding for his other needs.

This means that at about $15 an hour, he can afford about 15 hours of support per month to access his community. This is a young man who needs prompts for all activities and who will sit on a couch, day after day, playing video games if he does not have ongoing support.

His parents did not agree with the score because they said the assessment was too subjective and should be higher so that their son would be eligible for needed supports and funding.

Many parents call my office with a similar story. Their child’s needs are identified, but there is no money to address those needs when the person turns 19. Complicating the story is mistrust in the assessment for eligibility, an area that the committee may want to further explore.

I suggest speaking with Dr. Jennifer Baumbusch, who is the associate professor at UBC’s School of Nursing and a parent of a child with special needs. She and her colleagues recently published the journal article, “Alone in a Crowd? Parents of Children with Rare Diseases’ Experiences of Navigating the Healthcare System.” It describes the diagnostic journey and seeking and accessing services.

Dr. Baumbusch advised of a new research paper that was recently accepted into the Journal of Advanced Nursing. It is a systematic review of transitions from childhood to adult care for young people with intellectual disabilities. Once it is published, the committee may learn from its findings.

I also suggest speaking with Allison Pooley, executive director of the Asante Centre. They are contracted by PHSA to conduct FASD assessments. They can tell the committee more about assessment and diagnosis for people with FASD and the importance of assessing executive functioning, along with the adaptive and diagnostic.

For project area 2, examining gaps in the assessment framework and capturing and addressing the needs of children and youth with neurodiverse special needs and the skills and capabilities of their caregivers, I have heard from community partners that homeless youth with multiple complex needs learn ways to adapt to their environments, which may include the use of substances to cope. Mental health and substance use may prevent them from being stable enough to be assessed according to the current assessment framework used by CLBC.

Homeless youth often come from underfunctioning families living in poverty, some with their own mental health and substance use challenges. These challenges may result in the decreased capacity of caregivers to accurately inform the assessment process.

[8:15 a.m.]

Eligibility for CLBC services requires an assessment for adaptive functioning that must be made by someone who knows the youth well. For homeless youth or former children-in-care youth with no one to assist in the assessment, this is a significant barrier. For older youth who are former children in care and have lived in many communities, it is challenging to locate the historical assessments and records to support CLBC eligibility, resulting in a long wait for an assessment.

I was involved in a complex case involving CLBC, a health authority, the justice system and community agencies. The young First Nations person at the centre was in limbo because of an inability for the person to be assessed in order to get the supports and services that they very much needed.

Often the first time a young adult with multiple complex needs but no clear diagnosis comes to the attention of a system is when they end up in the emergency room or in the justice system. They, in turn, look to CLBC to help the person. But this often results in a Jordan’s principle–like problem, where the person at the centre of this jurisdictional conflict is left receiving no supports or services.

What I have heard and seen about the capabilities of caregivers is that for people who have involved family, that family becomes the de facto caregiver. If you consider the young man with Down syndrome, it will be his family that provides the necessary supports for him to be included in his community and live a good life.

While parents may be the experts about their children, they are also exhausted and asking for help. This tension may put the young adult in a vulnerable position. Ideas that have been presented to my office that might address this include paying the parent to provide care when appropriate and putting a case manager in place to support the person and their family and to help navigate the systems.

Under project area 4, examining changes to eligibility and supports at various transition points, including overlaps in assessments and opportunities for simplifying processes, — I think there’s lots of opportunity for that — particular attention needs to be paid to the bridges between early intervention and elementary school, and elementary school to high school. At this time, supports erode at the time of entry to school and between elementary and high school, but these life transitions tend to receive less attention than that of high school to young adulthood.

I suggest speaking with Tracy Humphreys, who’s a parent with BCEdAccess, about transition points while children are in the school system. BCEdAccess conducted a survey in 2015 to find out if parents were considering leaving public school and why. These were parents with children with special needs. They found that out of a total of 236 responses, about half had removed their child from public education, the number one reason for leaving being the deteriorating emotional health of their child due to the lack of support.

I have heard from child psychologists that they are concerned about requests from CLBC to redo assessments in order to meet CLBC’s requirements. While they are happy to support student transitions, they say that recent changes to CLBC’s process has resulted in the need to repeat assessments for no educational or diagnostic purpose other than to comply with CLBC eligibility. This negatively impacts other students who are waiting for needed assessments.

When I hear about situations like this, where one system is asking the other system to conform to its needs, I wonder about the purpose and if the policies and procedures put in place are there to support the person or the system.

Psychologists outside the school system are questioning the age limits identified in the Community Living Authority Act, which states that “developmental disability means significantly impaired intellectual functioning that manifests before the age of 18 years….” There is general acknowledgement that a child’s brain continues to develop until around 24 to 26 years, or longer.

The RCY says it’s the right thing to do — to support youth aging out of foster care until 24 years. The DSM-5 says that the onset of a disability must be within the developmental period but does not provide an age limit. Instead, it relies on the clinical judgment of the assessors. Limiting eligibility for CLBC funding to the age of 18 is incongruent with the DSM-5 and the knowledge that the brain continues to develop into early adulthood.

[8:20 a.m.]

That is the end of my presentation. I want to thank you for this opportunity and will be pleased to take your questions.

N. Simons (Chair): I want to say thank you very much for some compelling comments in there — really helpful to us, I’m sure. I was just reflecting back on the times when I’ve referred families to your office, and I’ve had nothing but positive responses. So thank you for your work. I think it’s essential people know there’s a place to reach out to when it appears that everything else is so difficult and challenging. It’s very important, the work you do.

I’m sure my colleagues have questions.

R. Leonard: Yes, I was like…. Then I thought: “Oh, right. We’ve got Hansard over there making sure that everything is recorded.” Thank you very much for all those tips on where to look a little further.

The question that I had for you is around…. Earlier on you said that your numbers were increasing because of the increased prevalence of autism and FASD. Yesterday I think we heard that there isn’t an increase in the caseload, significantly, in CLBC. I’m wondering if you have any comment around that.

L. Dospital: I think that is the area to notice. There is an increasing number of people with FASD, yet they do not make up even a minor number in the services that CLBC is providing to that population. Asking the question why, I think, would be an important one.

N. Simons (Chair): I have a question about the facilitator’s role at CLBC. Are they involved prior to the child aging out of the children’s service system?

L. Dospital: Yes. I would suggest talking to CLBC about their processes. CLBC gets involved in transitioning as early as 16 to 17. More likely, it’s probably around 18, just because of resources. The facilitator initially meets with the family and the individual, looks at their needs and uses the GSA to determine what those needs might be. When they turn 19, that’s when the funding decision is made.

N. Simons (Chair): I have a follow-up question with respect to the role of the Representative for Children and Youth and your role as an advocate as well. Is there overlap or duplication? Are there ways that we can clarify streams?

L. Dospital: That is a good question and something that I have been pondering myself. This role has existed for 27 years and predated RCY, so it was used in a different way. There are cases where we’re both involved, but generally, it’s one or the other, because we do similar things in terms of listening and talking and trying to be collaborative and problem-solve.

The difference is that my area extends into adulthood until the person dies. It’s not focused on youth transitioning, although I do get calls about that. My focus is the whole person’s life from about 17 on. I think, if I can just follow up on that, there’s no end of need for advocacy. Having options is always a good thing.

R. Singh: Thank you so much for your presentation. You just mentioned the school-age kids and the survey that was done for the parents. They wanted to move their kids to the private…. Was there a time period, or is the survey done occasionally? Like, do we do it every year?

L. Dospital: That’s a non-profit organization. They did it once, and they’re currently doing a new one. I would suggest looking at their website, where you can get many more details about what they learned, or talking with Tracy Humphreys. But they’re a non-profit. They’ve done one survey, and they’re doing another one.

L. Throness: Thank you so much for coming today. I’ve never heard of your office before, and I’ve been around for five years here in this job. I’m going to be taking your information home to my constituency assistants, and you will get calls, I’m sure. So that’s great.

L. Dospital: That’s great.

[8:25 a.m.]

L. Throness: I was a bit disturbed to hear you mention, a couple of times, things like: are assessments to help the person or to fulfil system requirements? I wonder if you could describe for us…. Can you encapsulate for us all the cases in which you think that is happening? You mentioned a couple.

L. Dospital: I may not be able to encapsulate all the cases, but what I’ve heard and observed is that…. You heard yesterday from Health. In MCFD, in the health system, in the education system, then in CLBC, each organization has a process not just for diagnosing a condition but for assessing a need for a service. It’s almost a double assessment, right? It’s assessing to be diagnosed, and then there’s assessment for the service. Each one of those systems has their own process, and they bump up against each other because they’re not all well defined.

For example, in the adult world which I’m most familiar with, there is a service called the DDMH, which is developmental disabilities and mental health. But they only serve a segment of the population. You heard yesterday from Seonag about PSI, which is the personalized supports initiative. That population is separated from the IDD population.

Just by explaining this, there’s this fragmentation. Everybody has their own system. Everybody has their own process. Everybody has their own assessment. Then each service only serves a certain number of people, and not all people. It’s quite fragmented.

L. Throness: I think this a fruitful line of future inquiry.

Could you talk for a moment about the GSA, which is a tool? Who uses the GSA? What is it? Is it a good tool, an accurate tool?

L. Dospital: You heard Seonag yesterday describe the tool as imperfect. It’s very difficult to find the best tool to be able to make an assessment for what a person’s needs might be. They have landed on the GSA and provide training and have policies and guides to try to ensure a consistency across the province. That’s the goal of CLBC to do that.

When you have one person who’s meeting with a family and hearing their story and then you’re listening to what they’re saying and scoring them in these ten categories…. At the end of that scoring, they’re left with: “You’re a certain level.” At a certain level, you will get support; at a certain level, you will not.

People are really dependent on that number being higher if their child has significant needs. There’s room for subjectivity, because it’s individual facilitators who are conducting the assessments. But it is also the best tool that they have right now. It’s a difficult situation for the organization.

L. Throness: Just one more follow-up. If a person is assessed using the GSA, does that assessment follow them throughout their life? Are they helped or hindered by that assessment? Are they sort of tagged by that assessment?

L. Dospital: That assessment does follow them and is used throughout their life. It can be redone if there are changes in the person’s life — for instance, if someone loses their housing or if there are changes to their health. If there’s anything that would indicate that there’s a change to their needs, they would redo the GSA to look at: what are the different supports that that person needs? And then they would make appropriate adjustments based on that.

N. Simons (Chair): I agree, Laurie, that the GSA is an important area to focus on, I think. I’ve seen examples in, perhaps, our offices. I’ve heard of examples where parents or family members have had issues not only with the GSA tool but how it has been implemented.

You ask: is it a good tool? Is it an accurate tool? It’s almost like: well, is a hammer an accurate tool? It’s really how you use it. I think it’s a really important area to maybe continue looking at.

I know Teresa has a question.

T. Wat: Thank you, Leanne, for your presentation. I never heard of your office, like my colleague. I thought I was the only one who never heard of it. I’m glad that Laurie is very seasoned, and he never heard of it. Surely, your office has been doing a lot, from what I heard from you. Thank you for your passion and for all your services to those who don’t understand the system.

[8:30 a.m.]

Like Laurie, I’m extremely disturbed to hear what you said about what the system requirement was versus the personal needs, and also about a lot of mistrust by the clients. You have been in this office for three years. I just wonder…. It looks like, from the presentation, that there’s a breakdown in the all the ministry in providing the services.

What do you see yourself? Do you see your office being really effective in pushing for changes in the ministry? I’m sure that you have made some headway, but how effective do you see your office as, and what do you see in the years ahead?

L. Dospital: Well, there was a review done of this office in 2015. It was at the time when the person who was the advocate previously had retired. She was in the role for 17 years. Rightfully so, a request was made to conduct a review to understand what this role is, how it is beneficial and how it has changed over the years. The result of that was to continue with the role. I was subsequently hired, but one of the points that was highlighted was to increase the visibility of the office around the province. That is something that I’ve been doing over the past three years: trying to get out to communities, to listen.

I think that the benefit of this office is that families and people with IDD tend to share information with me that they may not share with others because I have that element of independence and neutrality. There’s a benefit to that because then you’re hearing things that others may not. I think that my efforts to increase the presence of this office have been successful to one degree: I’m invited to this committee to speak. But then I’m learning about people who have not heard about my office. It’s an ongoing process to introduce my role to people in the community.

N. Simons (Chair): Thank you for that. I’m glad that you’re here, and I’m glad that my colleagues are learning of your office’s existence.

Wasn’t there a time when the advocate’s office was out of MCFD?

L. Dospital: That’s correct. It began in 1992. That was when community living services was provided out of the Children’s ministry. When it shifted to Community Living B.C. in about 2005, I think, this role then became part of the Ministry of Social Development and Poverty Reduction and works alongside CLBC.

E. Ross: That was the best presentation I’ve heard over the last few days. I was trying to piece together how all these ministries work together to service the needs of the individuals.

You mentioned Jordan’s principle. I’ve heard that term a number of times over the last few months, so I quickly googled it. Jordan’s principle doesn’t just apply to that specific case. It applies to Aboriginals across the board. Nobody seems to understand the jurisdictions or responsibilities of governments, whether they be federal or provincial. To add to the confusion or the disconnect between provincial ministries, are there additional problems with the federal departments or ministries out there that are trying to deal with Aboriginal issues, in this respect?

L. Dospital: I wouldn’t be able to comment on that. It’s not an area that I have any expertise in.

E. Ross: Okay. How about the funding issue, then? At any level, have the feds and the province come to any agreement in terms of their responsibilities for Aboriginals in these cases?

L. Dospital: I would follow up with the Ministry of Social Development and Poverty Reduction and CLBC. I can’t provide the details, but I would encourage you to follow up with them for more information about that.

In 2014, I believe, CLBC started providing service on reserve. There was an agreement at that time. CLBC was able — it was through some conversations — to provide service on reserve. Then there have been subsequent conversations — which, again, I would encourage you to talk to the ministry about.

R. Leonard: I just was looking through your annual report, and you don’t have a very big budget. Does that mean it’s you and one support staff?

[8:35 a.m.]

L. Dospital: It’s me and Peter. It’s mainly for salaries, for travel and to operate an office.

R. Leonard: And you’ve dealt with 271 calls or contacts? That’s pretty significant. I applaud your hard efforts, obviously.

The question I had. You may have answered this, and I just missed it. Yesterday we heard, from CLBC, that if they don’t have a diagnosis before they’re 19, they’re out. That’s my sense of it. Is that something that you deal with on any kind of a regular basis — people who don’t have a diagnosis because they just have stayed out of the system?

L. Dospital: What I’ve heard is that there are youth involved in the justice system who aren’t in school and who are not connected to MCFD, but they’re connected to the justice system. Because they’re not connected to school or MCFD, they are young adults who are vulnerable and being touched by one system, but they’re not in a position to do assessments. Then they make referrals to other systems, and then that tries to happen.

As I was saying earlier, for older kids, in essence — a child who’s, like, 20 — that don’t have a diagnosis or that haven’t had an assessment but their functioning is compromised or low, they’re getting in trouble with the law or attending hospital emergency rooms. That’s when we become aware of them. Then those conversations start: “Well, how can this person get assessed? Who can do this?”

There is a process for this situation, if it’s FASD, where CLBC will, through PHSA, conduct an FASD assessment, but they don’t have the same system for autism. I’ve talked with young people who are in their 30s and who haven’t been assessed, in helping them work their way through the system to get assessed, to get the needed supports and services.

N. Simons (Chair): Can I ask a question about the nature of the advocacy you provide? Is it often clarifying a role or the regulations or legislation? Or is it assisting individuals who have, perhaps, difficulty in relaying what their needs are? Or is explaining to families why some services may not be available? What’s generally the nature of the referrals?

L. Dospital: Well, it is all of the above. It’s all of what you just said. Peter is the first point of contact if someone contacts my office, and he is able to help problem-solve. Sometimes it’s just referring to the appropriate services, explaining what the system is that they’re inquiring about or providing information to them. Sometimes that’s as simple as it gets. Sometimes it’s more involved, where we have to contact CLBC to ask questions.

I find that with advocacy, communication is often at the core of it. There’s one party who’s unhappy and another party who thinks that everything’s going okay. But what’s missing in between? That’s where my office plays a role. Peter and I try to find that place where we can find a path forward to help resolve the problems that are in play. It’s a lot of work around individuals and their families, but then there’s the systemic piece of trying to understand how the systems work, to be able to point out where effort may need to be made.

N. Simons (Chair): Well, I really want to just thank you again for your ability to help us on our project. I hope that we can come up with some recommendations that’ll improve services. We look forward to hearing from you again, maybe when the results are in or perhaps even when we have a draft, but your contribution to our committee’s deliberations is very valuable. We thank you for that.

With that, we’ll just take a couple minutes’ recess. We’ll reconvene to discuss the rest of our agenda items.

The committee recessed from 8:39 a.m. to 8:46 a.m.

[N. Simons in the chair.]

Special Project

N. Simons (Chair): Thank you, Members. I hope you enjoyed recess.

We are going to discuss schedules, budgeting and community visits. When we have the results of those discussions and they become public, that’s when, I guess, our announcements will go out to communities.

Let’s go in camera to discuss these in detail. Can I have a motion to do so.

M. Stilwell (Deputy Chair): So moved.

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

Motion approved.

The committee continued in camera from 8:47 a.m. to 9:07 a.m.

[N. Simons in the chair.]

N. Simons (Chair): We are back on the air. I seek a motion to adjourn.

Again, thank you.

We are adjourned.

The committee adjourned at 9:07 a.m.