Updated: Feb 24
Community Living BC CEO Ross Chilton (right) with friend and self-advocate Tyler
By Spencer van Vloten
Formed in 2005 to meet the unique needs of individuals, families, and caregivers across the province, Community Living British Columbia (CLBC) now funds supports and services to over 20,000 adults with developmental disabilities, autism, and FASD.
Spencer van Vloten caught up with CLBC CEO Ross Chilton to hear about challenges to the community living system, how each of us can promote inclusion, and what self-advocates are doing to keep connected.
Spencer: How has the pandemic hit CLBC self-advocates hardest?
Ross: The main things we heard before the pandemic were: I want a job, I want a home of my own and don’t want to live with my parents forever, I want friends, and I want to be healthy with access to emotional support when I need it.
Then, suddenly, all these things became even bigger issues because of the pandemic. Our self-advocates are losing their jobs, becoming more isolated, and are concerned and sometimes confused about the impact COVID might have on their physical and mental health. So in this respect it's not necessarily new issues; it's existing ones that have become bigger challenges.
Another thing we were aware of before the pandemic started was the need to develop stronger relationships with Indigenous communities. 2,500 CLBC supported individuals are Indigenous, and many other Indigenous persons who would be eligible for services aren’t making it into our support networks.
That’s forced us to ask what we can do to improve our engagement with Indigenous communities, and how we can provide effective, culturally sensitive support once they are there. This has become especially important, because without the right support these communities are going to take the impact of the pandemic even harder.
We have been expanding our Indigenous relations team and are working hard to strengthen our networks so that no one who could benefit from CLBC support is closed off from it.
Spencer: What can be done and is being done to ensure that CLBC self-advocates, particularly those living in group settings, are safe?
Ross: COVID exposed a weakness inherent in congregate living. The congregation in group home settings tends to be much smaller than in aged care--usually only around 4 people--so the risk isn't as high as you see in other situations where people are living together.
"COVID exposed a weakness inherent in congregate living"
But obviously it’s not enough to just fall back on that, because a group is still a group. So from the beginning we’ve made sure that our service providers have to gotten the support they need to keep things safe, and I want to give real credit to them, because they've been able to adapt and make changes, like reorganizing shifts to limit group size, while still being able to provide high-level care in a safe environment.
Regardless of where or how someone lives, providing education about COVID protocol has been very important. The more informed our self-advocates, service providers, and families are about how to stay safe during the pandemic, the more comfortable they feel and the more equipped they are to educate others and help them keep safe too.
To that end, we've created a guide of COVID resources for families, and also hold regular calls to provide info and answer any questions they might have.
Spencer: What has CLBC changed in order to help families adapt to the pandemic?
Ross: Our families really stepped up from early on. There were fewer services and support staff available due to pandemic restrictions, and a gap was opened that families quickly filled.
Something which became clear was that respite was going to be a major issue during the pandemic, as family members and caregivers were having to provide extra support and often found it taking its toll.
We wanted to ensure that respite care was something that all families could take advantage of, but on the other hand, not everyone is comfortable taking respite during the pandemic, when the need for care and support of a loved one is so high.
So we have been providing more flexibility in how families and care providers can approach this. For example, now letting unused respite funds carry over to another funding period, and also broadening the eligibility of how those funds can be used, such as allowing respite funds to be used on home care instead.
It’s not just all about CLBC either. Groups like Vela and the Family Support Institute deserve immense credit for stepping up, working together, and sharing ideas about how we can help each other stay safe and be well during the pandemic.
Spencer: How has CLBC been advocating for its self-advocates with respect to the vaccine rollout?
Ross: We’ve been lucky to have a strong connection with Dr. Behn-Smith, Bonnie Henry’s deputy. As I think I mentioned, we held many calls with her where families have been able to ask questions and give their views.
CLBC has made our concerns very clear with the government, as well as our belief that our supported individuals should be prioritized. There are factors that make our population particularly vulnerable, such as pre-existing health issues, living in group home settings, and the ability to fully understand social distancing and hygiene protocol.
"CLBC has made our concerns very clear....as well as our belief that our supported individuals should be prioritized"
Although I'd prefer for our self-advocates to be in the first group to receive the vaccine, I appreciate that many factors go into it the decisions about who gets it and when, and I’m glad that at least phase 3 includes persons with developmental disabilities.
But I need to stress that it's not just a matter of "when?" We still need to make sure our supported individuals have consented to getting the vaccine and understand what it is and why they're taking it, and we have formed team within CLBC to deal with these issues.
Spencer: What has the pandemic revealed about the gaps in the community living system? What about the strengths?
Ross: We should address that by first asking ourselves: when we come out of the pandemic, what should we reclaim, sustain, or let go?
In-person contact is something we’ll want to reclaim, because, while the growth of virtual services has been a real positive, they just can’t replace in-person programs.
As I mentioned before, the pandemic has also highlighted the vulnerability of congregation. We absolutely have to make sure congregate services have good plans to respond to this. I’m not saying they don't already have these, but it will require a lot of ongoing learning and adapting as things move forward.
And I must say that I am so impressed by the resiliency of our self-advocates, families, and service providers. They have kept their heads up and banded together, and provided a boost to each other and everyone at CLBC.
If we'd just done our own parts and remained to ourselves, we wouldn’t have succeeded nearly as much. The sector has grown closer and this collaboration will continue beyond the pandemic.
"I am so impressed by the resiliency of our self-advocates, families, and service providers"
Spencer: Moving to another topic, BC Disability recently talked with the Individualized Funding Resource Centre Society. Have you seen much change in how many people are using CLBC's individualized funding options?
Ross: I really believe in the value of individualized funding.
It gives authority to the individual to decide how the money will be spent, meaning they have the power. We also find that individuals and families use their money very efficiently, and that they know best how to spend it. After all, who knows someone's care needs better than the person and their family do? It definitely should be available to anyone who wants it.
That said, the number of people using individualized funding hasn’t been going up for many years, and we need to ask why.
An issue that often arises is that not everyone is comfortable taking on the administrative responsibilities involved. There is more work required—things like reporting on money, keeping track of expenses, hiring, preparing schedules—and it can be a lot to deal with.
There's support to help with this though. Vela is an invaluable resource for people wanting to set up a microboard to use their individualized funds. There are also host-agency agreements, where an agency manages the funds, but the individual has a say in how those funds are used.
Spencer: CLBC recently started Key to Home, a resource for inclusive housing info. Why the decision to do this, and what do you think must be done to improve the housing situation for persons with developmental disabilities?
Ross: We give a lot of attention to housing because it’s such a game changer. When a person has a home that’s affordable, safe, and of good quality, that's a base from which they can do so much more in their life.
When you have key to home, it says something important: you get to decide who comes in and who doesn’t. If you don’t have a key to home, you’re not in secure place and don't have control, and then instead of being able to focus on your goals and the things you enjoy, you are preoccupied with the housing issue
We realize we need to work with BC Housing as part of government, so that our self-advocates have more options. BC Housing can create more affordable housing options, while CLBC can create and provide supports in that housing. As part of this, there must be engagement with the various levels of government, including providing them with the resources showing both the need and benefits of inclusive housing, and that's where Key to Home comes in.
There’s also been real interest in last year for non-profit and co-op housing providers to provide housing to adults with developmental disabilities, and we’ve been having conversations with the Aboriginal Housing Management Association as well, so the relationships and dialogue are building.
Key to Home is a CLBC initiative to promote inclusive housing
Spencer: What is something that British Columbians can do to support adults with developmental disabilities?
Ross: People should introduce themselves, smile, and not avoid someone just because they have a disability. Inclusion of people with developmental disabilities or any disability is good for every other group that struggles to be included
Be open, be receptive, find the similarities but also appreciate the differences. It’s better for all of us to be on the inside together and not kept outside.
"Be open, be receptive, find the similarities but also appreciate the differences"
When I grew up, we never saw kids with developmental disabilities in school, because many were locked up in institutions or in segregated programs. And if you don’t see people with developmental disabilities, you don’t get to know people with developmental disabilities, and then you don’t realize that they have a lot of the same interests and goals you do.
So I want to see more inclusive education, starting from very early, but inclusion doesn’t end when school ends. Inclusion needs to happen in the workforce, and in every facet of life, so that it’s the norm and what people expect.
Spencer: What does 2021 and beyond hold for CLBC?
Ross: The next few months will be hard, because the cases are still up, and the vaccine isn’t rolling out in large numbers yet.
As the vaccine rolls out, and tensions and cases go down, things will return slowly to how they were before. There will be a level of fatigue because its been so hard for people, especially on mental health.
We all need to be kind to ourselves and others, and that will help us get through this.
Spencer: Is there anything you’d like to add?
Ross: I can't stress enough how appreciative I am of what different individuals and groups have been doing to support each other during the pandemic.
One way CLBC is showing this appreciation is by providing grants to self advocacy organizations for programs which increase social connection during pandemic. I know they have some amazing things planned and we’ll see their projects come to fruition over the next few months.
Casey Douglas is director of Olivia Douglas Community Services, one of the self-advocacy groups to receive a CLBC social connection grant
I also want to add how important it is that the compassion shown during the pandemic continues beyond it. People are thinking about each other more, and this provides an opportunity to move forward creating tighter communities and finding support where there wasn't as much before.
It'll continue to be a challenge, but it's nothing we can't get through together.
Spencer van Vloten is the editor of BC Disability. To get in touch, send an email to email@example.com!