ontario young carers

Raising awareness for young carers in Ontario

Catherine Monk-Saigal, Program and Communications Associate

When we hosted Ontario’s first ever young carers forum in late November, 2017, we shined a long overdue spotlight on Ontario’s young carers. We asked the young carers present—a group that is too often overlooked— to share their experiences, journeys, and stories, so that we can all work together to drive meaningful change. For many of them, the forum was the first time they had ever interacted with other young carers, the first time they were asked about their experience, and the first time they felt like the experiences they were sharing could make a difference.

We asked them what action was needed around awareness, identification of young carers, advocacy, and cultural considerations. And what do we need to do to make change happen?

Throughout the day, the most pressing issue became clear: there is a profound and universal lack of understanding and awareness around the role of young carers.

And this lack of understanding is not system agnostic. Young carers experience it throughout the healthcare and education systems. Often, this lack of understanding and awareness translates into stigma and fear. 

What’s surprising about this? And how do we tackle it?

There are very few of us who will never wear the caregiver hat. However, for young carers, this hat is worn at a much earlier age than most.

There is an underlying fear among many young carers about the stigma and misunderstanding of their role. The young carers at the Forum said that often, friends and schoolmates have a hard time understanding that their caregiving role is not a choice–that they have a duty and a responsibility that many of their peers simply cannot understand or relate to. This is largely due to this lack of understanding.

To combat the issue of awareness, one suggestion from the Young Carers Forum was that we celebrate Young Carers Awareness Day on January 25, 2018, like they do in the UK. So that’s exactly what we are doing: a simple social media blitz that we hope will contribute to the growing awareness throughout the province.

We hope we won’t be alone in this. We want you to join the conversation we’re helping to spark online.  

Follow #YCAD on Twitter throughout the month and join the conversation on January 25th at 4 p.m., as we host a tweetchat on young carer awareness co-moderated by Fitsum Areguy, an Ontario Young Carer (see below for more information on the tweetchat).

As we work through our “next steps” as an organization, it is very clear just how valuable and meaningful the act of coming together with a common experience was for these incredible young people. We just need to listen to and read the comments from young carers to realize how important this is.

One young carer said: “This was life-changing. I’ve never talked about my experience before. It’s always about my sister.” Another stated: “I feel like I have made a big influence on the future of young carers and no longer feel alone in my situation.”

We’ve often tweeted and blogged about the lack of supports available to Ontario’s young carers. We are now moving forward with the first step to increase awareness and understanding in the hopes that this will lead to better and more widely accessible supports.

 YCAD tweetchat info

About the tweetchat:

We’re pleased to be hosting our first-ever tweetchat at 4 p.m. EST on Thursday, January 25, 2018—Young Carer Awareness Day.

Here are the questions we’ll be asking:

  1. What are the impacts of being a caregiver on a young person?
  2. How is a young carer’s role different than the role of an adult caregiver?
  3. How do we build awareness and understanding of young carers?
  4. Change is needed. Where do we start?

The tweetchat will be co-moderated by young carer Fitsum Areguy and Christa Haanstra, The Change Foundation’s Executive Lead, Young Carers.

Follow #YCAD, as well as @TheChangeFdn, @fitsumareguy and @C_Hanstra to participate. 

Click to download our Young Carers Awareness Day toolkit 

Click to view full Storify of YCAD tweetchat

Ontario’s Young Carers Awareness Day

Join us on Twitter on January 25th, 2018 to raise awareness of Ontario’s young carers.

Young Carers Awareness Day is celebrated in the UK. For the first time, we are also recognizing this awareness day in Ontario. Join us on Twitter (@TheChangeFdn) using #YCAD to join the conversation. We invite young carers, young adult carers, organizations that support young carers, and anyone that is interested in seeing change in Ontario for young carers, to help create an online blitz that will create awareness and understanding of young carers in Ontario.

Ways to get involved:

  • The Ontario Caregiver Coalition and the Young Carers Initiative – Powerhouse Project are leading the way on a declaration of January 25th at Young Carers Awareness Day. Share their announcement, or better yet, declare the day yourself to your audience. #YCAD social media icons have been created for everyone to use.
  • The Change Foundation and others will be sharing many stats and other information about young carers to bring the topic to the forefront for policy makers, influencers, elected officials and others. Re-tweet this content, or create your own to add to the online blitz.
  • Join the one-hour tweetchat live at 4 pm to talk about young carers. Check out our latest blog post to learn more.

We hope you’ll join us to make the first-ever Young Carers Awareness Day in Ontario a big success.

 

YCAD Icon
Click to download Young Carers Awareness Day toolkit

 

 

This needs to spread like wildfire: A path forward for young carers in Ontario

Christa Haanstra, Executive Lead, Strategic Communications and Young Carers

“As a young caregiver, you often feel like you’re on your own.”

Those are Emily’s words, but they may as well have been spoken by any of the 20 other young carers we had in the room at our recent Young Carers Forum, the first time in Ontario that young carers, researchers and policy makers were brought together to start planning a way forward for young carers.

As the caregiver conversation gains momentum in Ontario, it’s important for us to not allow our province’s half a million young carers to be left behind. Too often, this sub-population of family caregivers – which has its own issues and needs related to schooling and age and just being a kid – is forgotten.

“No one should ever have to make the choice between their family and their future,” said another young carer at the forum. He’s right—we’re asking too much of young carers without giving them anything in return. 

The Forum was an opportunity to start changing that.

We wanted to hear directly from young carers, and we most certainly did. In fact, I think we all learned something valuable that day: Don’t underestimate young carers because of their age. These children and youth are wise beyond their years, and they will be the change they want to see in the world. We just need to listen.

And we did, and it was a privilege to hear these mature and articulate young carers tell their stories, and it was a privilege to hear their ideas for change. Theirs are stories that need to be told, and theirs are ideas that need to be implemented.

We can’t be cynical about this. We need to start with the knowledge that we weren’t wasting our time at the Forum. There are too many people listening—Ontario’s Premier Kathleen Wynne told us as much in a welcome video and Ontario’s Patient Ombudsman Christine Elliott attended the entire Forum, and even spent her lunch hour with the 20 young carers, hearing their stories in more detail. There are too many young carers who shared their experiences and who demand to be heard.

It’s time for change.

But what should that change look like? Here’s what we heard from the young carers at the forum:

  • We need to build awareness that young carers are everywhere. They should be recognized and valued. This is where we need to start.
  • We need more supports for young carers in the worlds of education, health care and social services, and they need to be available, reliable and consistent. In the words of young carer Emily, “don’t make me go find them.”
  • We need to create safe places for young carers, but we need to think about how to create these places and where. We need to realize we can’t just wave a magic wand and make something “safe.”
  • We need more programs for young carers. We heard from some of the programs that already exist in Ontario at the forum, and they’re mostly organizations with small budgets and large results.
  • Young carers need more resources. And by that, I mean money. Health care spending is directed at current priorities. We need to all work together to make young carers a provincial and national priority.
  • Collaboration is crucial here—young carer issues cross a variety of sectors: education, health care, social services, community care. We need an integrated approach. This will be a challenge because that’s not how government is used to functioning.

How do we get all this done? For me, that means listening to the words of 14-year old Abbigail, and her advice to young carers:

  • Don’t be afraid of telling people about your life
  • Talk to people you trust
  • Do things you normally enjoy to keep your self-esteem up
  • Stay true to yourself
  • Don’t let others bring you down

Let’s start there, and let’s keep moving this forward. We have a job to do to make young carers a priority now – and we need to grab some attention. So let’s go. This is just the beginning.

To quote a speaker at the forum: “This needs to spread like wildfire.”

Watch Hot Talks on Health, A Spotlight on Young Carers

On November 20, 2017 we hosted our second Hot Talks on Health event focused on family caregivers. The event shined an important light on the often invisible population of young carers. We heard keynote commentary from the U.K. on the state of young carer supports, the journey to legislation recognizing the vital role of young carers, and how young carers are supported (or not) in the healthcare system. In addition, we heard the story of an Ontario young carer, as well as insights on the caregiver recognition and support movement in Ontario.

Panelists:

  • Abbigail, Ontario young carer
  • Jenny Frank, Strategic Consultant, Young Carers England
  • Janet Beed, Health Care Consultant and Advisor, Ontario Caregiver Initiative

 

If you were unable to attend this latest edition of Hot Talks, a full video from the event is available below.

Webcast video

 

Unearthing the organizations that support young carers

Christal Huang, Research Intern

In the spring of 2017, I joined The Change Foundation as an intern. Although I had always had a passion for healthcare, and I had worked in the field before, I had never been involved in work focused on the experience of family caregivers.

Upon my arrival, I was tasked with creating a comprehensive list of the programs and services that exist in Ontario that support young carers. This inventory, which we hope will help guide young carers, their families and healthcare providers, is nearly complete, and we hope to have it released in November. 

Here are some of the things I learned through the process of building this resource and speaking with leading organizations across Ontario:

  • All across Ontario, organizations are quietly and independently doing bits and pieces of work that have the potential to make a large and meaningful difference in the lives of young carers. Each organization I spoke with shared the unique work they are doing to support young carers. But they were often unaware of other organizations who are doing similar work or work that would complement theirs. It surprised me as I imagined the impact that they could make for young carers by simply being informed about each other’s work, and then of course by working together.     
  • Ontario does not have a universal understanding and definition of young carer. After meeting with a few of The Foundation’s existing young carer partners, I turned to the internet to further my search. The results for ‘young carer support in Ontario’ were few, with only the organizations that we had already worked with showing up. But when I combined other relevant terms, such as sibling, child, youth, young adult, and caregiver, a slew of other organizations popped up. Although many programs and organizations were not specifically labeled as young carer supports, many were actually supporting this population. Without a universal definition and understanding, it is difficult to be on the same page in terms of how the work from each of our organizations can fit together to ultimately support young carers in the different ways they need. We cannot have a clear direction and create common goals if we do not agree on the problem we are trying to solve.
  • Most of the existing resources I found are in the Greater Toronto and Hamilton Area (GTHA). As with many other healthcare services, supports for the health and well-being of young carers are concentrated in GTHA, or other metropolitan areas like Ottawa and London. While many of these organizations open their doors to young carers coming from anywhere in Ontario, the reality is that these services and programs are likely out of reach for many young carers. This highlights just how crucial it is that we work together to build capacity and deliver meaningful programs and services to young carers wherever they are. Ultimately, given that nearly a quarter of Ontario’s youth aged 15 to 24 are in a caregiving role, there are simply not enough resources available.

Going through this process really opened my eyes to the knowledge gaps that exist when it comes to young carers. There’s a lot of work that needs to be done to create awareness of, and support for, all caregivers. I was proud to be a part of it at The Change Foundation. It’s also the driver behind the upcoming forum that The Change Foundation is hosting to tackle this issue head on, the first of its kind in Ontario. 

If you know of an organization that works with young carers that we haven’t spoken to yet, or to learn more about the upcoming Young Carers Forum, please contact Catherine Monk-Saigal at cmonksaigal@changefoundation.com.

WHAT’S BEING SAID

Stephane is a young caregiver who assists with caring for his younger brother. Don has been caring for his wife since her diagnosis with early onset Alzheimer’s 5 years ago. Hear from Stephane & Don on what their #caregiving experiences have been like: bit.ly/2VuxJCK pic.twitter.com/FfZTG9IqkE