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.



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