Young Carers

Young carers in Canada, a spotlight on research

The opinions expressed in this blog post are those of the author and do not necessarily reflect those of The Change Foundation.

VS_Headshot
               @DrVivianS

Vivian Stamatopoulos, Ph.D., Young Carer Researcher

In May, CBC’s The National aired Caring for Tor, a short documentary about young adult carer Stephane Alexis. Stephane, a 24-year-old from Ottawa, has put his educational and career goals on hold to help care for his brother Torence (Tor), who has cerebral palsy. 

Stephane is not alone.

My 2012 research showed that over 1.25 million Canadian youth between the ages of 15 to 24 provided unpaid caregiving, in the context of aging and/or long-term illness or disability[i]. Importantly, these statistics omit children and youth under the age of 15 years, putting the actual number of Canadian young carers somewhere in the ballpark of 2 million. Although it appears that Canada has one of the largest global young carer cohorts, the issue remains relatively unheard of across Canada.

To be clear, these children and youth are not just casually helping out. In fact, the majority of young carers involved in my research provide roughly 30 hours of unpaid care per week. They juggle the equivalent of a full-time job alongside their full-time studies. The most troubling of my findings, however, relates to what I call the “young carer penalty”[ii] incurred by those providing ongoing and substantial care. Building off the established “care penalty”[iii] experienced by adult women who have historically provided the lion share of unpaid caring labour, I show how substantial child and youth-based caregiving constitutes a form of hidden labour that carries with it a range of pecuniary and non-pecuniary costs. These costs include (but are not limited to) decreased educational performance, compromised employment and extracurricular opportunities, increased social isolation, fractured peer relationships, sleeplessness, anxiety and self-harm[iv]. What’s worse, these young people often deal with this care burden in isolation given the limited number of young carer programs across Canada[v].

In other parts of the world, young carers are factored into national policies and have access to a comprehensive range of caregiver supports. In the United Kingdom, young carers have legal rights as caregivers and are provided with a choice of a direct monetary payments or access to over 350 dedicated young carer programs[vi]. In Australia, similar services exist in addition to a national young carer bursary program for those studying at the secondary school level or above[vii], prompted by evidence showing that Australian young carers are more likely to be NEET (neither in education, employment or in training) than their non-caregiving peers.[viii]

While we have a long way to go to catch up to other countries currently supporting young carers, there has been a recent and growing movement across Ontario to bring light to the cause. In November 2017, The Change Foundation brought together over 20 young carers and over 60 professionals, policy makers and researchers for an inaugural Young Carers Forum. Here, the goal was to highlight the issues faced by young carers and discuss how to better support their unique caregiving needs. Recently, I have also been called upon to share my research with ministry officials and community organizations across Ontario, who are recognizing that an increasing number of young carers utilize their services. While these developments are positive, they must remind us that on the precipice of change, we stand to take the growing provincial interest in young carers and turn that into a national framework addressing the needs of such young people across Canada.

About the researcher: Dr. Vivian Stamatopoulos is a professor in the Faculty of Social Sciences and Humanities at University of Ontario Institute of Technology (UOIT). Her research focuses on child and youth-based caregiving (i.e., young carers). For more information, Vivian can be reached at vivian.stamatopoulos@uoit.ca.

References:

[i] Stamatopoulos, V. (Forthcoming). Supporting or separate domains? Parentification and young carers in Canada. In L.M Hooper (Ed.), Parentification: racial, ethnic, cultural, and contextual influences on culturally tailored assessment and treatment (pp. XX–XX). New York, NY: Springer-Science.

[ii] Stamatopoulos, V. (2018). The Young Carer Penalty: Exploring the costs of caregiving among a sample of Canadian youth. Child & Youth Services. doi.10.1080/0145935X.2018.1491303

[iii] England, P., & Folbre, N. (1999). The cost of caring. The Annals of the American Academy of Political and Social Science, 561, 39–51. doi:10.1177/000271629956100103

[iv] Stamatopoulos, V. (2018). The Young Carer Penalty: Exploring the costs of caregiving among a sample of Canadian youth. Child & Youth Services. doi.10.1080/0145935X.2018.1491303

[v] Stamatopoulos, V. (2015). Supporting Young Carers: A Qualitative Review of Young Carer Services in Canada. International Journal of Youth and Adolescence, 21(2), 178-194.

[vi] Ibid.

[vii] http://youngcarers.net.au/young-carer-bursary-program/

[viii] Cass, B., Smith, C., Hill, T., Blaxland, M., & Hamilton, M. (2009). Young carers in Australia: Understanding the advantages and disadvantages of their care giving. FaHCSIA Social Policy Research Paper #38. Canberra: Department of Families, Housing, Community Services and Indigenous Affairs.

Ontario’s first Young Carers Forum

In November 2017, The Change Foundation hosted Ontario’s first Young Carers Forum – bringing together 20 young carers and over 60 professionals, policy makers and researchers to talk about priority actions needed to support young carers in the important role they play in health care, in society and at home.

Throughout the day young carers were asked to share their experiences, journeys, and stories, so that we can all work together to drive meaningful change. For many of the young carers, 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.

Through the discussions, the following five priority areas for action were identified and voted on by all participants:

  • Increase awareness and understanding of young carers.
  • Work on better ways to identify young carers and link to the education system
  • Build an alliance of young carers organizations
  • Work with the Ontario government to ensure that young carers are included from the outset of the new caregiver organization
  • Influence an inter-ministerial and inter-governmental collaboration to support young carers

Working in partnership with caregivers and health care providers, our goal at The Foundation is to fundamentally change the way the health care system interacts with caregivers, and shine light on the vital but often unrecognized role of family caregivers, including young carers.

Young Carers Forum

Videos:

Voices of Ontario’s Young Carers

Highlights from Ontario’s First Young Carers Forum

Abbigail’s Story

Ontario young carer Liam answers –
Why is raising awareness about young carers important?

Ontario young carers Amy & David answer –
What do you want other young carers to know?

Ontario young carer Stephane answers –
What advice do you have for other young carers?

Ontario young carer Alissa answers –
How do you cope with being a young carer?

Media Stories:

  • Metro Morning (Emily’s young carer story)
  • Metro Morning (The Foundation’s Christa Haanstra speak to CBC’s Metro Morning about Young Carers and The Foundation’s role)
  • CBC.ca/Up North (Alissa’s young carer Story)

Inventory:

What are the impacts of being a caregiver on a young person?

Pic of Fitsum Areguy
                             @fitsumareguy

The opinions expressed in this blog post are those of the author and do not necessarily reflect those of The Change Foundation.

Fitsum Areguy, young carer 

When I talk about the impacts of being a young carer, my lived experience sheds light on how complex it is.

I was 10 years old when I became aware of how different my home life was from my peers’. My parents were refugees who fled war in Ethiopia and Eritrea, and they struggled to adjust to life in Canada. Taking care of my family was not a conscious choice at first, it was just the way things were. I got so used to doing things for my parents that it became baked into my identity.

One memory of caring for my parents that I look fondly back at now was when I was in the sixth grade. My father was attending night school to get his GED, and his English classes were difficult. He came home after class one night and slapped a book and papers onto the kitchen table. “Please my son.” He speaks English mixed with Tigrinya when he’s frustrated. “Aytered’anin (I don’t understand). Read this and tell me what is this.”

The book was Hemingway’s The Old Man and the Sea, along with instructions from his instructor for a 2500-word essay. There was no other choice – I was compelled to help him. I enjoyed the reading, and he got a B+ on that paper.

This was the norm for me – translating for my parents, answering phone calls, writing letters, et cetera. All this extra work came at a cost though. At school, I was exhausted from having spent many nights staying up to help my parents with various things. I dozed off in class which got me in a bit of trouble, but I never explained why I was so tired. I didn’t want anyone to know that I was different; I just wanted to fit in. As far as I knew I was the only one among my mostly homogenous, upper-middle-class classmates who had to do these things for their parents.

As I had already accepted the role of a support person in my family, when my mother was diagnosed with a brain tumor it altered my life course. I was in my first year of university when she received the diagnosis, and my caring responsibilities and coping efforts grew to a point that I could not sustain my studies and also be there for her. I eventually dropped out.

I got through this tough time with support from The Young Carers Project of Waterloo region. Their participatory action research project on young carers’ experiences produced some helpful tips on how to support young carers, which you can check out here. They asked the right questions and supported me in the way that I needed to be supported.

Looking back on my life shows me how positive and negative young carer outcomes can be two sides of the same coin. Sometimes, being a young carer can be lonely and isolating, and at other times it can be a life-giving and affirming experience. Despite the hard times, I was proud of what I could do for my family, and I attribute my greatest strengths to my experience as a young carer.

 

How is a young carer’s role different than the role of an adult caregiver?

One of the main differences is that it is socially accepted for adults to care for others; as a result, young carers are often overlooked and are far more hidden than their adult counterparts.[1] [2]

There are times when the young carer role blurs parental lines, and there is sometimes a lot of shame and guilt within families who have a young person caring for other members, further masking young carers in the home.[3] [4] In addition, young carers have developmental stages and milestones that can be interrupted, sped up, and/or missed as a result of their caregiving.[5] Dedicating time and energy to caring for family members, especially at a younger age, can mean time away from just growing up and forming an identity and agency that isn’t bound to another person.[6]

 

How do we build awareness and understanding of young carers?

 I agree with three things that Vivian Stamatopoulos[7] identified as vital for the young carer movement in Canada: (1) targeted young carer legislation, (2) greater public awareness of their existence, and (3) more dedicated young carer programs.

These three things are interrelated and impact one another, but the greatest awareness begins with legislation.

Social policy at the provincial and/or federal level that focuses on young carers would be a game-changing development. Our friends across the pond have The Children and Families Act and Care Act, and it opened up a whole world of support and awareness of young carers in the UK.

There are only a handful of programs and groups in Canada that are directly working with, or are focused on mobilizing supports for, young carers. Groups such as the Powerhouse Project – Young Carers Initiative, the Young Carers Program, and the Young Carers Project have been doing this work in Ontario for a long time (see this inventory for a complete list). These groups are trailblazers in our province, and we need to highlight the work they do so that other groups can follow their lead.

 

Change is needed. Where do we start?

As we heard in the tweetchat (click to view Storify of tweetchat) some good places to start are within schools, healthcare and social services. Integrating supports and fostering partnerships within and across these systems will be crucial for creating lasting change.

To this end, last year The Change Foundation brought many stakeholders together at their Young Carer forum, and a lot of connections were made. I’d like to see more collaborations between young carers, researchers, policy makers, education and health care providers.

I get really excited when I think about the potential for interdisciplinary efforts that use technology to create accessible and user-friendly projects. Phone based-apps, video games, art installations across various mediums – these are approaches that are modern, creative and unique that have the potential to meaningfully engage young carers, their families and the wider public.

Ideally, future progress will be driven by young carers who self-identify and self-advocate. This is much more likely to happen when there are more effective allies in communities who can empower and uplift young carers to use their voices and create change.

 

Fitsum Areguy is a young carer who was heavily involved in The Change Foundation’s 2017 Young Carers Forum – the first event of its kind in Ontario – and who co-moderated The Change Foundation’s Young Carer Awareness Day tweetchat in 2018. Fitsum is a graduate of the Recreation and Leisure Studies program (Specialization in Therapeutic Recreation) at the University of Waterloo. He is one of ten recipients of the Ontario Medal for Young Volunteers in 2016 for his work with the Young Carers Project. 

 

SOURCES

Ali, Lilas, Brit Hedman Ahlström, Barbro Krevers, Nils Sjöström, Ingela Skärsäter (2013), “Support for Young Informal Carers of Persons with Mental Illness: A Mixed-Method Study,” Issues in Mental Health Nursing.

Banks, Pauline, Nicola Cogan, Sheila Riddell, Susan Deeley, Malcolm Hill & Kay Tisdall (2002), “Does the covert nature of caring prohibit the development of effective services for young carers?”, British Journal of Guidance & Counselling.

Charles, Grant, and Tim Stainton and Sheila Marshall (2012), Young Carers in Canada: The Hidden Costs and Benefits of Young Caregiving, The Vanier Institute of the Family.

Hamilton, Myra Giselle and Elizabeth Adamson (2013), “Bounded agency in young carers’ Lifecourse-stage domains and transitions”, Journal of Youth Studies.

 Moore, Tim, and Morag McArthur (2007), “We’re all in it together: Supporting young carers and their families in Australia,” Health & social care in the community.

Stamatopoulos, Vivian (2015a), “Supporting young carers: A qualitative review of young carer services in Canada,” International Journal of Adolescence and Youth.

 NOTES

[1] Ali et al. (2013).

[2] Banks et al. (2002).

[3] Moore & McArthur (2007).

[4] Smyth, Blaxland and Cass (2011).

[5] Charles et al. (2012).

[6] Hamilton & Adamson (2013).

[7] Stamatopolous (2015a).

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

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.

Young Carers – The Invisible Population

TCF response to Kielburger article in the Huffington Post

Christa Haanstra, Executive Lead, Young Carers

To see Craig and Marc Kielburger shine a large spotlight on young carers, in their recent Huffington Post article, “Forced to Grow Up Too Fast, Canada’s Young Carers Face Trauma,” is extremely encouraging. This invisible population which makes up 28% of 15 to 24 year olds in Canada, has gone unnoticed for far too long. It becomes even more urgent when you consider there are many more youth left out of these statistics, as there is no data on caregivers under 15 years old. The sad reality is that caregiving responsibilities can start in children as young as five.

The Change Foundation is working in partnership with caregivers and health care providers to fundamentally change the way the health care system interacts with caregivers, and shine light on the vital but often unrecognized role of family caregivers. This includes young carers.

It’s much easier to explain young carers when we talk about it in the context of siblings living in, and helping out, in a household where one of their brothers or sisters has an illness – usually a chronic illness, disability or a serious health condition. But the truth is there are many young carers who play a notable role in supporting a parent or grandparent with a health issue. Those stories are harder to tell.

The Change Foundation has seen the impact of caregiving on young carers firsthand. Last year, we spent a week with eight young carers between 10 and 18 years old, who used photos, video and storytelling to bring a voice to their own personal stories. Six of them have bravely agreed to share their stories publicly.

There’s no question that there are two sides to the young carer coin. As poignantly stated in the article, “Panic attacks. Depression. Exhaustion. Social isolation. Poor academic performance and absenteeism. Behavioural issues,” happen as a result of their caregiver responsibilities. The other side was very apparent when I worked at Holland Bloorview, Canada’s leading pediatric rehabilitation hospital. I always knew there was something about the siblings of the children that we served. That something was usually a level of empathy beyond what most adults have, a degree of maturity well beyond their years, and a very high-achieving attitude.

As the article highlights, we know from the UK experience that young carers benefit greatly from both peer and professional support, as well as socializing with other young carers.

In the UK, under the Carers Act 2014, all caregivers, including young carers, are entitled to an assessment, followed by supports. Moreover, the onus is on health and social providers to identify young carers. Once a young carer is identified, they are assessed, and often the first step is to ‘right size’ their responsibility, by advocating for added services for the ‘cared for’ and for supports for the young carer.

Clearly, this doesn’t happen in Ontario. Not only is there a lack of awareness or understanding of young carers, there is an abject lack of supports and resources. Where can they turn for support? As a professional, where would you refer them? There are three small trailblazing organizations that offer some supports–Powerhouse Project (Niagara and Haldimand/Norfolk regions), Young Carers Program (offered by Hospice Toronto) and Young Carers Project (Kitchener Waterloo)–as well as a handful of researchers budding in academic centres. This is a start, but doesn’t even reach the tip of the iceberg.

At a provincial level, we’ve started to see more discussion and focus on the needs of family caregivers. As the momentum builds, let’s not forget about young carers.

At the 2017 international conference on Young Carers held in Sweden, the needs of young carers were highlighted on a global stage. For me, a slide from a presentation by Ingvar Nilsson, National Economist (Sweden) summed up the call to action well. “It might look expensive to support young carers…but it is almost always more expensive not to do it.” Known as the “silent population” we all have a role to play in giving young carers the attention and support they deserve.

 

 

A bird’s eye view on young carers services in the U.K.

Catherine Monk-Saigal, Program and Communications Associate

Early on in The Change Foundation’s year of listening and learning from family caregivers (2015-2016), young carers emerged as an often-overlooked group of caregivers. A focus on meeting the needs for young carers services in a variety of settings will be integrated in our work with our four Changing CARE partnerships.

We often use the U.K. as a measuring stick of how far our province has to go in terms of support, recognition, assessment, and identification for caregivers. In February 2017, I had the incredible opportunity to travel to the U.K. to explore young carer services, and learn firsthand about the incredible strides the U.K. has taken to recognize and support its young carers.

Throughout my time with several different young carer organizations, the sheer abundance of community supports was overwhelming, from programs within schools to group community programs to online communities. A majority of these support organizations are funded and nestled within local authorities and social care programs.  At times, it seemed as if there was an overlap of some support services. Quite an exceptional problem to have.

What was the driving force behind this?

Interestingly, all the agencies agreed that the Carers Act of 2014, coupled with the changes to the Children and Families Act have made a notable difference in their ability to provide services. For many, it opened the doors into schools, and health and community care organizations, including general practitioners. The legislation has helped increase awareness of young carers, but most importantly, it puts the onus on the health, community and education system to identify young carers and facilitate access to an assessment. It’s their legislated right.

Although the organizations we met with provide assessment and either refer or host supports for young carers, many also had a focus on enabling schools to create and independently run their own support and identification programs for young carers. In fact, several of the young carer organizations had created a criteria or scheme system for school programs, awarding schools based on the level of recognition and supports offered. Schools even took it upon themselves to identify a professional (teachers, counselors, principals, head teachers, etc) to act as young carer champions in their setting. 

One step further

Transition planning is a buzz word heard often as patients and caregivers try to navigate Ontario’s health and community care system. However, young carer agencies in the U.K. take this one step further. They realize that the role of young carers shifts when they move into young adulthood, so they are creating distinct young adult carer services within their agencies. Furthermore, there are a number of young adult carer services sprouting up in the U.K., to meet the unique needs of this population at a transitional time in life.

Although The Change Foundation is primarily focused on caregiver interactions with Ontario’s health care system, my time in the U.K. was a clear reminder that the role of a young carer surpasses the health care system. In the U.K., schools are a vital partner to local young carer programs. It was abundantly clear that without the national awareness of the role and the legislative push to ensure that the needs of young carers are met, the programs, services, and supports at a local and national level would not be as robust as they are today. 

As we move forward with our Changing CARE projects, we will continue to look internationally, in the U.K. and beyond, for inspiration. Look for lessons and takeaways from our own Jodeme Goldhar, Executive Lead of Strategy and Innovation, from her international meetings in our next newsletter. 

My whole experience: Olivia’s young carer journey

Catherine Monk-Saigal

olivia
Olivia Wyatt, 17, is a young carer from St. Catharines, Ont.

As long as she can remember Olivia Wyatt has been a caregiver to those around her. She didn’t grow into it and it didn’t come naturally—it was just always part of her.

“It’s hard to remember it coming at all,” says Olivia, 17, “It was just always there. Caregiving was my whole experience.”

Olivia’s caregiving experience is unique due the fact that she is a young carer. Young carers are children, youth, and young adults who provide care and support to a family member with a health issue. It’s estimated that approximately 17% of Ontario caregivers are between the ages of 15 and 24. They are often referred to as an invisible population, as very few people are aware of their situation.

The eldest of four siblings, two of which have Autism and ADHD, Olivia has been the long-time right hand for her mom Lianne, a role which intensified when Olivia’s father Tim was also diagnosed with Autism and ADHD in his 40’s and who suffers from debilitating migraines as a result.

“Olivia was my gift from the universe and my gift to the universe,” says Lianne.

Lianne describes Olivia as fiercely protective of her family, noting that many of Olivia’s friends growing up didn’t understand the need for Olivia to help her brothers off the school bus, or her responsibilities to be at home to assist her mom.

Like many young carers, Olivia has maturity beyond her years, describing her biggest caregiving challenge during high school as simply “staying sane.” To do this, Olivia found solace in drama, which helped to alleviate her anxiety, and also turned to books as a way to escape.

Olivia also found support through the Powerhouse Project, an inter-agency strategy that offers activities and programs for young carers in the Niagara region and Haldimand and Norfolk counties. The Powerhouse Project gives young carers a much needed break from their regular caregiving duties and connects them with young people in similar situations.

“[Powerhouse] is a place where you can just ‘be’ and there are other people who understand,” says Olivia.

Recently eight young carers from the Powerhouse Project, including Olivia, took part in a one-week digital story telling workshop hosted by The Change Foundation in collaboration with Project ReVision, a program of the University of Guelph. Armed with cameras, laptops, and recording equipment, each young carer had the chance to learn and create their own short film about their caregiving experience.

Lianne says this experience opened Olivia’s eyes to a new medium of expression and storytelling.

Now Olivia finds herself at the start of a new experience. After graduating from Laura Secord Secondary School in St. Catharines with a glittering scholastic record (though Olivia is compelled by modesty to mention two B’s in her Grade 12 year), she has just started her first year at Brock University in the Concurrent Education program.

However, with this new opportunity to start making a life on her own, Olivia is also debating whether she wants to caregiving to be part of professional life as well.

But if possessing this foresight, thoughtfulness, and poise say anything about Olivia, it’s that she’s a dynamic young woman and carer with a bright future ahead of her.

For more information on young carers and to watch other videos from Powerhouse Project youth, click here: www.changefoundation.ca/ontario-young-carers.

WHAT’S BEING SAID

For our first case studies report, we profiled three pediatric centres: @MountSinai's NICU, @HBKidsHospital and @CHEOhospital. Review the case studies and the insights we’ve gathered here: bit.ly/2Stemsl pic.twitter.com/qQf09yEEIc