The Power of Language

The organization I volunteer for supports young carers and their families. Young carers may support a family member with a chronic physical or mental illness, chronic disease, dementia or a sibling with an illness.  They might support their parents who are new to Canada who require translation services at appointments or a young person providing care to other siblings while a parent was caring for a family member. What I like about the Young Carers Initiative is that the language that is used is family friendly.   Terms like "strength based practice", "holistic', "inclusive", and the fact that the organization has always viewed the families they service to be "caregiving families" drew me to the group.  This language lends itself to the reciprocity of care that exists in most families.  Finding balance between the person who needs care and the person providing care is easier when you look through a lense that aims to capture care that goes in both directions.  There is a distinct need to balance the needs of both caregivers and care recipients in providing caregiver supports.  We need to ensure that we are not implying that care only occurs in one direction or we are further alienating the families we aim to serve. 

Heroes in the Home

Unpaid caregivers recognized for sacrifices

By Karena Walter, The Standard

Thursday, May 16, 2013 9:43:39 EDT PM

Melissa Ruffolo at the Heroes in the Home banquet Thursday. Julie Jocsak/ St. Catharines Standard/QMI Agency

• 

Change text size for the story

Print

Report an error

They are thrust into the role of caregivers at a time when their biggest worries should be dating and acne.

Youth who care for grandparents with dementia, siblings with autism or parents with mental health issues.

“I used to feel nobody else was going through the same thing,” said 15-year-old Melissa Ruffolo of Niagara Falls, who cares for her mother with bipolar disorder. She now sits on the youth advisory board of the St. Catharines-based Powerhouse Project, an organization that provides support to young carers under 18.

“I guess I’m happier because of them. I’m not alone,” she said.

Over 300 kids in Niagara are registered with the Powerhouse Project, part of the Young Carers Initiative. The group was being honoured with a Caregivers Recognition Award Thursday night at Club Roma by the Hamilton Niagara Haldimand Brant Community Care Access Centre.

The access centre, which connects people to support services, recognized 49 Niagara residents Thursday who take on unpaid caregiving responsibilities at home. They are adults with aging parents, spouses with partners who have fallen ill and even teenagers caring for parents or siblings.

“They’re unsung heroes many times,” said Melody Miles, Chief Executive Officer of the access centre. “This is just a way to say, ‘You make a difference.’”

Often under the radar, many caregivers were nominated by support staff going into homes who noticed family, friends or neighbours making sacrifices. Many of those residents don’t have the benefit of a caregiving community.

It was the third year “Heroes in the Home” were recognized by the access centre.

“These are folks who are not paid,” Miles said. “They do it because they love who they do it for.”

For Ruffalo, who lives with her mother, joining Powerhouse Project last year allowed her to connect with other youth going through similar situations. She takes part planning events and has been able to help others who thought they were alone.

“At first I was shy but it did help me it he long run,” she said.

One Canadian study found 12% of youth between 12 and 17 consider themselves a caregiver.

“They’re the silent population,” said Michelle Lewis, executive director of Powerhouse Project. Lewis said no one at school can relate to them but in the program there is some normality. It provides respite and helps kids manage feelings of stress, isolation and self-esteem.

The average age of Niagara children in the program is eight to 12.

“They’re beyond their years in age. They have to grow up quickly,” she said. “Their families are under a lot of stress above and beyond normal life.”

Those youth and adult caregivers honoured Thursday were from across the region and were given a pin to recognize their efforts.


karena.walter@sunmedia.ca

BY THE NUMBERS

2.7 million - No. of Canadians 45 and older who provide care to an older person with a long-term health condition or physical limitation according to Statistics Canada

$24-$31 billion - The dollar figure representing how much unpaid caregivers in Canada contributed in 2007 according to a study

12% - No. of youth between 12 and 17 who self-identified as young carers in a 2010 Canadian study of high school students

 http://www.stcatharinesstandard.ca/2013/05/16/unpaid-caregivers-recognized-for-sacrifices

CBC Radio The Current Story

In the CBC interview (link posted below) my daughter and I both share candid recollections of what the early days of living through a devastating Multiple Sclerosis relapse were like.

While CBC did an excellent job of capturing how my illness personally impacted my daughter the impacts had profound ripple effects that challenged many other people.  My children felt the impacts of my illness most personally. They felt the uncertainty and unpredictability of my illness as personally as I did.  They rode waves of sadness, anger at the disease, at its intrusion into our autonomy, and anger that I wasn't able to be the solid rock they had always counted on and needed. When a person experiences the symptoms and diagnosis of a chronic condition the whole family is impacted in a variety of ways.

The impact of my illness rippled out from my small nuclear family to my parents, to my friends and to my coworkers.  My mother quit her job to help care for me and my kids.  Without her incredible support I would have never made it out of hospital and home.  She came to my home everyday; she cooked endless meals, did laundry and cleaning.  My ability to keep up with day to day chores had been dwindling for sometime and there was tons of work that needed to be done.  My mom and dad coordinated a ramp being built to enable my return home from hospital long before I was ready to leave.  Without their endless care, encouragement and support I don't know how we all would have made it.

Note:  We are sharing this story with purpose.  We would like to shine a light on the strengths and needs of families living with chronic illness to promote the Young Carers Movement.  As members of Young Carers Canada we support the development of supportive programs directed at Young Carers and their Families.  In our area there is programming available through the Young Carers Initiative in their program The Powerhouse Project.  This programming is available in Niagara and Haldimand-Norfolk.  Across Canada there are other programs and services available in select areas but a more comprehensive nation wide strategy is necessary.  These programs provide support, information, respite, homework help, and skills training.

With that as an introduction here is the story as captured by CBC Radio:
The story of Young Caregivers

National Interest in Young Carers

I've been in touch with a CBC Radio reporter, Ellen Saenger who is producing a documentary on Young Carers.  They interviewed several people close to the cause and will be releasing their interview in the next few weeks.  I am looking forward to hearing the broadcast as the interview process really took me on a journey back in time.   I will post a link here when the documentary is released.  Until then stay tuned!

Who Cares About Young Carers?

Posted: November 20, 2012 | Author: PPGR | Filed under: Canada, Education, Leadership, Public Policy, Social, Vass Bednar | Tags: Action Canada, Invisible policy challenge, Young carers |3 Comments »

Vass Bednar

I didn’t.

This summer, when my Action Canada Task Force was developing our policy project, I resisted exploring these people called “young carers.” It felt fake and imagined. The fact that I hadn’t heard of young care giving before made me wince.  I mean…there was no way it was a Canadian policy priority if it wasn’t on my radar (joke). I doubt it’s on yours.

More seriously: I felt like caring for a family member was just something normal and loving and and that “it” had always existed – so why worry about it now, and why make a big policy deal about it?

“Guys!” I dismissively implored my team via Google+ Hangout, “We can’t do a project on something no one’s ever heard of!”

But guess what? We can.

Some background: Action Canada is a public policy and leadership development program for promising young Canadians. Each year, up to twenty Fellows are selected from across the country to participate in the 11-month program. In addition to learning more about different parts of the nation and crafting op-eds, Fellows are assigned to a “Task Force,” where we develop an action-oriented policy project related to a theme. You can check out past projects here.  This year’s theme is: Does Canada have the education system(s) it needs to meet the socioeconomic challenges of the future?

We spent May, June and July in an intense deliberative process where we sought to agree on a meaningful and relevant topic. Our options bubbled with subjects that stakeholders obviously cared about: the “boy problem,” Aboriginal education, teacher training, school readiness, e-learning, and culturally relevant health and wellness. And then the novel and totally unfamiliar: young care giving.

Who are these considerate youth? Young carers are most commonly identified as young individuals under the age of 25 who play a significant role in providing physical and emotional care to a disabled, ill, or mentally challenged  family member such as a parent, grandparent or sibling (precise definitions vary). They are an important but uncounted group in many Canadian communities. We are focusing on teenagers— young carers between the age of 12 and 18, though we acknowledge that there are significant numbers of young adults and younger children who are also young carers.

Why teens? We believe that teenage caregivers are an important subset of this group because they are situated at the confluence of elementary school, high school and higher education. The level of support provided at this stage in life will strongly influence their completion of high school, and transition to postsecondary education or the workforce.

We hope that our project will help lend urgency to what is currently an invisible (or less visible) policy challenge. There has been some buzz around the topic lately. In particular, a report out of the Vanier Institute called, Young Carers in Canada – the Hidden Costs and Benefits of Young Caregiving(2012) helped position the familial issue.

And yet, the lack of a collective identity amongst young carers coupled with the inherent private-ness of the activity continues to contribute to its elusiveness on any policy agenda. In fact, young carers are emblematic of a classic policy dilemma whereby a lack of data and sense of urgency are at odds with each other: early research suggests the activity is prevalent, which compels concerted national survey research; and the absence of such descriptive national data weakens the seriousness of the problem.

So, who cares?

Right now, the non-governmental sector does. The Cowichan Family Caregivers Support Society, Hospice Toronto, and the Niagara Powerhouse Project are all engaging young carers and beginning to share program-related data that is helping us better understand young carers. But their impact is limited to local geographies and addresses only a piece of a much larger problem. For instance, these locally-based programs do not provide respite, financial assistance to young carers, and are not connected to the health and long-term care system.

Researchers also care. University of British Columbia faculty Grant Charles, Sheila Marshall, and Tim Stainton are leading the charge in a Canadian context by publishing case-study research. Their work provides a reference for other Canadian provinces.

Because Human Resources and Skills Development Canada funds the Cowichan program, we might be able to say that it—government—‘cares.’ But Canadians lack a national strategy for young carers that would officially recognize and define young carers. By lacking a coherent policy response,we’re failing young carers.

And why should educators care? Our policy approach is through ‘education’ interpreted as a mechanism and system because classrooms are a key nexus for support and place of negative impact. Young caring in the home can lead to lateness and absenteeism from school. The psychic burden of caring can also make it difficult to focus on the classroom. Positive outcomes can be realized and measured here.

Our list of potential responses to this problem is plentiful:

• A national survey (more data)
• A video game for young care-givers to raise awareness and build community
• A tool kit in schools as a resource for educators
• A national caregiving strategy that includes young carers
• A walk-on story line about young carers on a popular soap opera
• A monetary transfer in the form of a “carer’s allowance”
• An awareness week and/or festival
• A charity for respite opportunities  
• Championship from Canadian public figures

By failing to formally acknowledge and address the reality of young carers, Canada is not only failing a subset of it’s youngest generation but also falling behind comparable jurisdictions that boast sophisticated government-led policy responses  to and recognition of young carers like: England and Scotland (Young Carers), Australia (Carers Australia), and New Zealand.

Now, what about you?

If you care, check out our website. And if you (still) don’t, tell us via Twitter! Your reactions will help us shape the final report. And, if you’re in Vancouver, British Columbia on Friday, November 30^th, please join us for a Public Dialogue on Challenges and Change in Canada’s Education Systems. We’ll hear from Grant Charles, an Associate Professor in the School of Social Work at the University of British Columbia, Jeremy Berland, Deputy Representative at the B.C. Office of Representation for Children & Youth and Caroline Krause, Member of the National panel on First Nation Elementary and Secondary Education. Plus, you’ll get to learn more about the other Task Force projects, Standardized Testing in Canada and Teaching Questions Not Answers. More information on this event can be found here. The final reports will come out in February if you care to read them.

Vass Bednar (@VassB) is a graduate of the MPP program (2010) and currently works at the School of Public Policy & Governance as the Manager of Engagement and EA to the Director. She is a 2012-2013 Action Canada Fellow who wants to make public policy more fun. 

A dream takes flight: Young Carers Cause

I am honored, inspired, humbled, invested, uplifted, hopeful, and engaged with the young carers cause.

Honored to be a part of a movement that is empowering and supportive of young people who contribute in a multitude of ways to their families and communities.  Young people who work tirelessly and often without recognition at the expense of their own growth and development.  They do this without adequate skills, support, and recognition.  They fulfill a need in their family because the need is so big someone has to step up.

Inspired. I am inspired by the commitment of one woman who saw this need in our social fabric and worked tirelessly to ensure that the movement continued.  She discovered this need in her role at work and shone a light so bright it illuminated the needs of young carers so brightly that others joined her.  She lead her colleagues to put a call into the community for other agencies to look at the people they serve in an encompassing way to see if there were people young people impacted by illness in the homes of the clients they went to serve too.  Did the family of the client with a brain injury/Alzheimer's Disease/ MS etc.  have a child who lived in the home who had needs that their agency didn't have the resources to adequately support?  She began to ask other agencies to review the way the assessed the needs of caregivers in the home.  This provided the foundation for the Young Carers Initiative Niagara (YCIN).  The YCIN began to offer recreational opportunities for children in homes with a family member with an illness or disability with seedling money it was able to get through grant writing and with the dedicated help of volunteers.  When she retired the YCIN dissolved.

It wasn't long before the faces of the children she touched visited her in her thoughts and dreams.  She decided that there was more work to be done and went back to work.  She called the working group of representatives back to the table to bring focus and light to the young people who's needs had only fleetingly been heard.  Back at the table she found others who were as passionate as herself who were willing to give of themselves to keep working toward the goal of ensuring that the needs of this vulnerable group of children and youth were met.  The YCIN continued with strength in numbers to move the agenda of Young Carers forward.  Together, the group of agencies were successful in getting the attention of a major funding body and soon the Young Carers Initiative was a registered charity and an incorporated business.  The Powerhouse Project for Young Carers was the first project to offer programs and services to Young Carers in Canada.  They provided service to the Niagara Region (made up of 12 municipalities) and Haldimand Norfolk.  The movement has spread and there are similar programs popping up across the country.  This led to the development of Young Carers Canada.  It is currently operating as a steering committee much like the YCIN did, and a group of invested researchers, community partners, and stakeholders are working hard to create a national body to support and encourage the development of a social policy response for Young Carers across the country.  This has included creating a national body of research, development of standardized assessment tools, program planning tool kits for people who would like to offer programs within their agency/service delivery.

Humbled.   I am humbled by the commitment of the people leading this important mission.  The expenses, the time, the resources, the advocacy, that the bring to bring a dream to life is humbling.  They work on their own time, financially contribute in many ways, they juggle their own commitments to make considerable time for the work of this newly formed and forming movement.

Invested.  I am invited to the table as a person with a disability who has been concerned about the impact my illness has had on my children.  The people who headed these committees and Boards have allowed my voice to be heard and invited my contributions and those of my growing children to mold and shape this movement.  Under the leadership of the founders of this movement I have become increasingly invested in applying my own skills, strengths and resources to fuel this dream.

Uplifted.  Knowing that this work is translating into programs, services and leading a social movement whereby Young Carers are seen, heard,  and recognized in meaningful ways brings me great hope for the future.

Engaged.  There is still much work ahead for the Young Carers Cause.  I am plugged in locally and nationally to provide what ever I can to make sure that young carers get noticed for the contributions they make, to ensure that they are included in important discussions, have adequate support and have opportunities to just be kids.

Watch this clever You Tube short film about the social model.

A Day Without Limitations

I remember a time when a potential cure for MS was presented in the media.  I went off to You Tube and watched video after video where people documented their recovery.  I was so lifted by the potential and filled by hope.  I started thinking about how it would be to live symptom free.  As I thought about it it seemed that the possibilities would be limitless.  

If I could move about with confidence and focus and energy my life could once again be full of potential.  Or at least the kind of potential that was available to an average person.  I began thinking about what it meant to be average.  To work very hard to make ends meet.  To stand with my peers and struggle through issues that were common- balance work and family life, creating a savings plan for our children etc.  I felt so set apart from my peers, so alone in my struggles that were so focused on health related issues.

In an instant I went from of place of hope and possibility, to a reassessment of losses.  That highlighted the journey with an endless grief process that seemed to never let me out of its grip.  

So, when I was recently asked "What would you do with a day with out MS?" I was surprised at how quickly my response came.  My first thought was I don't live like that anymore.  I choose to live from a place of acceptance and peace.  That means I have to practice gratitude for what I have today, in this moment because this is where I live.  Spending time wishing and dreaming for a different life doesn't enable me to live well and build opportunities for myself.  This is true no matter who you are.  This is a universal truth. 

Once again, I stand in the same mindset of my peer group because after all we all have challenges to face don't we?