BC's Representative for Children and Youth, Dr. Jennifer Charlesworth
By Spencer van Vloten
BC Disability
BC Disability's Spencer van Vloten talks with BC's Representative for Children and Youth, Dr. Jennifer Charlesworth, about her new report, how the pandemic is hurting families, and what is needed for them to catch up as the province recovers.
Spencer: Today you released a report about how the system if falling short for children and youth with disabilities, and their families; can you tell me more about that?
Dr. Charlesworth: When the pandemic hit, we started to pay very close attention to advocacy calls and what are called 'reportables'—notifications when something like a death happens.
We noticed a trend that children and youth with disabilities, and their families, were having an especially difficult time. Families were reaching out and telling us that they were desperate: the support in schools was gone, the routine of school was gone, community services and respite supports were gone or reduced.
Parents ended up having to provide 24/7 care, which is exhausting and inflicts added financial difficulties when they no longer have the time to work to support their family.
We started reaching out to community organizations and heard the same stories, so we decided to do this project, which includes interviews, narratives, surveys, and data showing cracks in the system.
Spencer: What are some of the systemic gaps and barriers that you found?
Dr. Charlesworth: Understanding what’s available and how to access it is a huge issue—we need to improve communication processes and make it easier for families to find and connect to resources. You can have the greatest programs and supports in the world, but if people can’t find them then it means nothing.
Another thing we found is that there’s a very inequitable level of service from support workers. Some families will hear a lot about the resources available to them and have a support worker who really goes to bat for them, while others will hear nothing from their support worker despite the family's best efforts to find help.
So what happens is that these support workers are serving as gatekeepers for resources, and many families are being kept outside the gate.
In order to support families properly, we need to be flexible and nimble. No child or youth is the same, and there are so many different abilities and needs within families, not to mention that needs and resources vary depending on region.
Yet the systems in place can be very rigid and try to squeeze every child and family into the same box, and that leads to ineffective, even harmful service.
The systems in place can be very rigid and try to squeeze every child and family into the same box
We also must respect the wisdom and knowledge that families have about their children and their child’s needs. This knowledge reflects their cultural background, special personal characteristics or their child, as well as other factors that make their case unique.
They know their children best, and we can support them and help guide them through the system without forcing ourselves upon them in an overbearing and paternalistic way.
Spencer: Which children and families face the biggest obstacles?
Dr. Charlesworth: We saw that greater inequality is associated with certain demographics: Indigenous families and children, immigrant and refugee families and children, and children with disabilities that don’t fit into the diagnostic categories which get significant funding.
Funding and support in general is particularly a problem for children with Fetal Alcohol Spectrum Disorder (FASD), as very little is available for them, and even with the added pandemic measures they are pretty much cut off from support.
Another big factor which cuts across these lines is poverty. Costs of living are high, and even greater for families with disabled children. What this means is that when there are opportunities out there, it’s difficult to find the time and energy to write a bunch of applications or seek info when you’re exhausted from long shifts and struggling to get by, and have more immediate concerns to deal with, like finding food and shelter for your family.
It's difficult to find the time and energy to write a bunch of applications or seek info when you're exhausted and have more immediate concerns
And despite living in a digital age, there is still big inequality with access to technology. 30 percent of children using our services don’t have adequate access to technology. That’s a big problem, because if you don’t have internet, for example, you’re cut off from so many resources, especially with everything moving online due to COVID.
Therapies and classes are online, information and resources are put up online before anywhere else, and technology also offers a way for children, youth, and families to connect with and support each other; if you don't have technology much of this if unreachable for you.
Spencer: Your previous recommendations have been accepted by policymakers, but you've noted that they have not been implemented satisfactorily or at all. How can we push policymakers to act instead of just nodding along and paying lip service when it's convenient for them?
Dr. Charlesworth: First, we need to show policymakers that recovering from the pandemic requires us to not leave people behind, and that we can’t move forward without supporting these families. The pandemic has highlighted and increased inequality and the gaps in our public systems, and now we have the opportunity to use this heightened awareness to push for change for children and families.
It’s also easier to improve the situation when there is a chorus of voices speaking for change. I was part of the deinstitutionalization movement, and by rallying together, being loud, and being consistent we successfully built that movement and other movements. We need that popular support and collective voice, and we need to keep it heard, because it’s then when governments are going to pay more attention: when there is momentum for change.
Spencer: What should people do if they want to get involved and be part of this chorus of change?
Dr. Charlesworth: I would start by looking at the list of community partners listed near the start of the report, get in touch with them, and ask about volunteering and how they need support.
You can also participate in parent networks and raise the issue there, or join an advocacy or advisory body. It also helps, when talking with friends and colleagues, to let them know about the issue and why it matter to you..
You should be aware of the advocacy services our office offers as well. You can reach us at 1-800-476-3933, send an email, or use the chat function on our website, and for youth in transition out of the system or who are CLBC eligible, we continue offering them services until they are 24.
