Professor Saul Becker delivers the keynote speech at the Quebec Symposium on Young Carers, and answers questions from the crowd.
Key Chapters
00:07:59 Saul Becker’s Young Carer Story
00:16:39 What We Know From 30 Years of Young Carers Research and Practice
00:28:41 Why Children Become Caregivers
00:41:10 The Way Forward for Quebec and Canada
00:56:33 Question and Answer Period
Learn more about AMI-Quebec’s young carers initiative here:
About Saul Becker
Professor Saul Becker is regarded as the world leader for young carers’ research, policy and practice having pioneered this field and worked with children and young adults with caring responsibilities for over 30 years. He has been awarded nearly 60 research awards as Principal Investigator from multiple sources. He has 570 publications and invited keynote conference papers, including 18 books, and advises governments, policy makers and practitioners around the world on family carers issues, especially young carers. He was a young carer in his childhood. Saul has held professorial posts at the Universities of Cambridge, Sussex, Birmingham, Nottingham and Loughborough before moving to Manchester Metropolitan University in May 2022 as Professor of Children and Families. He and his work have featured in 10 television documentaries. Saul was named by Universities UK as one of the ‘Nation’s Lifesavers’ – “100 individuals or groups based in UK universities whose work is making a life- changing difference.”
About the Event
The Quebec Symposium on Young Carers, hosted by AMI-Quebec, was a day-long, free, hybrid and bilingual conference to address the wellbeing of young people who are affected by or care for a loved one with a disability, chronic illness, or struggles with mental health, substance use or problems related to aging. It brought together professionals and youth from mental health, community, health, education, government, and research spheres across the province to identify priority areas and take action to support young carers. It was made possible by the Canadian Centre for Caregiving Excellence and CHSSN.
Thank you to Arborescence for filming and providing AV support for this day, to Global AV for providing the headsets for the interpretation and to the wonderful interpreters from Co-op L’Argot for making our day accessible in english and in french.
About AMI-Quebec
AMI-Quebec is a grassroots organization that helps families manage the effects of mental illness through support, education, guidance, and advocacy.
Established in Montreal, Canada in 1977, we offer a wide range of services including workshops, support groups, counselling, outreach, resources, and more. All our services are free!
If you would like more information about AMI, give us a call at 514-486-1448 or reach us anytime at https://amiquebec.org.
Follow us @AMIQuebec on social media for more insights on caregivers!
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Good morning bonjour atus my name is air and in my role as the executive director of Ami Quebec I’m very pleased to welcome you to the second Quebec Symposium on young cares first I wish to recognize that we are gathering today on unseated indigenous territory on lands with a
Rich history of occupation and stewardship by indigenous peop for Millennia through to the present Day all of the interventions to be we discussed today need to be prefaced with the acknowledgement and knowledge of the impacts of the ongoing and historical nation-to-nation relations here and wherever you are joining us from I cannot move on without acknowledging my deepest pain about the many wars armed conflicts and mass
Violence in the world right now I wish we can recognize that hatred revenge and retaliation can offer at best a momentary relief from pain but respect kindness and love can sustain our humanity and aspir when we presented the first young care Symposium back into 2019 very little attention was paid to
The Children and Youth in Quebec who provide unpaid care to family members with chronic illness disability mental health or substance use issue and or problems related to old age while caregiving can have many benefits there are important risks and negative outcomes especially when associated with young age Al can
Today’s Symposium and with your participation we hope to elevate attention to Young carers and Notch of few notes at AMC we have already done that when two years ago we engaged Oliver Fitzpatrick as our first young cares coordinator a move that demonstrates our commitment to the advancements of this dossier you will
Soon hear from Oliver about the current state of affairs in that regard before I invite our special guest speaker I would like to wish you all a stimulating and inspiring in experience stimulant and inspirant our first and very special speaker is Professor Saul Becker Professor Becker is regarded as a
World leader for young carers research policy and practice having pioneered the is filled and worked with children and young adults with caring responsibilities for over 30 years he has been awarded nearly 60 research Awards as principal investigator from multiple sources he has 570 Publications and invited keynote conference papers
Including 18 books and advised governments policy makers and practitioners around the world on family cares issues especially young carers he was a young carer in his childhood sa has held professional post at the universities of Cambridge Sussex Birmingham Nottingham and Loro before moving to Manchester Metropolitan University in May
2022 as professor of Children and Families he and his work have featured in 10 television documentaries sa was named by University UK as one of the nation’s Lifesavers 100 individuals or groups based in UK universities whose work is making a lifechanging difference we are privileged to have Professor Becker
Sharing his experience and expertise with us so the stage is yours bour forgive me that I can’t uh do the whole presentation in French and English I leared I was saying on my table that um as a child I learned French at school but I’ve had so little opportunity to
Practice it that I’m not going to subject you to my very poor uh French so this will be uh in English um and thank you to Ella for her kind words and also to Ella and Oliver and all the team at Amy Quebec for organizing um this
Symposium so what I’d like to do for the next half an hour or so is to talk to you about um what we know about young carers what the research evidence tells us about children who have a caregiving role um and then I want to look forward
I want to focus most of the session today on what is is it that we’re trying to achieve um and what is it that we’re trying to deliver what are the outcomes that we want to deliver for young carers and I’m going to propose 16 points 16
Action points that will turn the dial that will accelerate um developments uh in Quebec for young carers based on experience from around the world in 30 years of research um and advocacy so let me start though at the beginning let me start about my own experiences and I
Hope you will forgive me or indulge me for a few minutes because I suppose I hadn’t realized how important these family experiences are to me but also to many people in this audience and many people outside around the world who Champion young carers our own experiences of caregiving so I was 12
When I first started to care for my grandmother and in this picture um you can see my mother is the person on my screen uh on on the left and my grandmother is the person on the right with the white hair and shockingly I can see that from this picture which was
Taken in 1960 when I was literally just a few months old um both my mother and grandmother seemed to be wearing the same dress and I have a feeling that in the 1960s flowery dresses like that um were all the rage but uh I I discovered these photos um last
Weekend when I was uh When I Was preparing um this speech and it was very um it was it was very emotional to go through your photograph albums and discover um these pictures um so that’s me um I wasn’t one um my grandmother um was uh holding me in the picture on on
The right and when I was 12 um I started to care for my grandmother so it was a it was a change round um so I looked after my grandmother from the age of 12 to the age of 24 um and my grandmother had Parkinson’s disease uh and uh and I found that
During that period um I had to do many of the things that you will hear other young ER is talk about today um and that we now know from research all over the world the kinds of tasks and responsibilities which Young carers have to perform so I cared for my uh
Grandmother um for that period um right through actually till I to when I was doing my PhD um and I remember the call because I was lucky I went to University I went to University at 18 I was and that was lucky for a young carer to be able to leave home
Because many young carers can’t leave home because who’s going to look after the person in their family who needs care if there isn’t another sibling or what will happen if you go to university and you’re leaving a younger sibling to have to take over the care and so these
Choices about what we call transitions to adulthood to University to Independent life are made much more complex when you have a care and responsibility but I was lucky to uh to go to university and then my grandmother passed away um when I was in the middle of my PhD um and then
Interestingly um I had to start caring for my mother so the person on the left of the photograph who also then um when I was in my 40s um she also then had Parkinson’s disease um and then in the final stage of her life she had dementia um and so my first caring
Experience was from 12 to Young adulthood and then my second experience was in middle adulthood um into my 50s um and so those that journey of two experiences of caring um have been very uh informative but during those periods I have to say that I none of us knew what
A young carer was because when I was 12 it was 1972 and many of you will not have been born in 1972 but you need to know that in 1972 in the United Kingdom there was no recognition of young carers um I didn’t have a label that defined myself as a
Young carer um there was no Services um we didn’t even really know what adult informal unpaid carers were there was it was a period of nothingness you know there was nothing um for children like me and hundreds of thousands of other children and also hundreds of thousands
If not millions of adults who are also providing care to other family members so um so that was a difficult time because there was no support no recognition uh young carers and adult carers had no specific uh legal rights or anything so what did I learn um when
I was caring for my grandmother in that period of childhood I learned the knowledge and the skills about how to have help someone you love to be comfortable um when they’re in pain or discomfort I learn how to feed someone um who wasn’t able to feed themselves
But to do it with dignity and with a sense of humor I learned how to um listen to talk to hear and to be physically and emotionally present for my grandmother um who needed that kind of support um I learned how to multitask to be able to do a whole range of caring
Responsibilities um whilst trying to go to school and that’s the challenge that’s the set of challenges that many young carers face in terms of combining caregiving and uh and school and then of course caregiving and University and then of course caregiving an independence and adult life because many young carers caring roles and
Responsibilities don’t just stop when they’re 18 and they stop being children they continue into their adulthood um as well so what have I learned since from reflections over 30 years of working with young carers I’ve learned that those experiences in childhood which I did not Define as anything other
Than being a son a grandson we do not define those roles um as caring we see it as an extension a representation of Our Lives of our love our affection of our family Duty are Bond um rather than in some um rather than with some label of informal or
Unpaid family care but what I have recognized and which I did not see at that time was that how important those experiences have become or were for what I’ve gone on to do so they were my past but they were also my future and they were my future in that those experiences
Define your values your principles what’s important um for you and for and what you hold dear and think you need to do as an adult in later life so for me they informed my values of what I hope are kindness Equity fairness public service and the key importance of family
As the glue the moral and important glue that holds decent and good societies together um and it also taught me that it it’s important that we support IND individuals to be the best they can to navigate the complexities of life but it also taught me to challenge the structures and the injustices that
Often construct those challenges that we have to live through so you know to stand up for social justice and to try and combat um the inequalities that many people live the health inequalities and so social economic inequalities to be an advocate for individuals but also an advocate for the cause so in
1992 um I started research on young carers I didn’t know at that time that I was going to uh spend the next 30 Years researching and writing on young carers um in fact the first study and I was talking to Nick Nick is a PhD student
Wave Nick and say hello and he’s on a panel later on I was talking to Nick about my first ever study which is called children who care inside the world of young carers it’s the cover that’s on the left hand side the top left published in 1992 or 93 it’s so
Long ago I can’t now remember when I published these things but it was the first study of young carers in the UK children who care inside the world of young carers it took us a year to do that study nine months to find the children and three months to do all the
Research and write it up because it was so difficult in 1992 93 to find young carers because no one knew who they were we had to explain to everyone a young carer is a child etc etc and even though I’d cared as a child myself when I did
This piece of research when I started it I hadn’t connected my own childhood experiences with the fact that I was now now about to do this piece of research so even then and I was 32 at that stage I hadn’t made the connections between my past and what would become um of my
Future and since then as Ella said there’s been 60 different studies 18 books and lots of research that I’ve conducted around the world and I’ve been very proud um to work with people all over the world who are concerned to improve the life chances and life opportunities um of young
Carers so summarizing 30 years of research in one slide is always a challenge but let me just tell you what I think we know about young carers I think we now know who they are and what they are we know that different methodologies produce different numbers and I’m going to just say something
About this in a little bit more detail so that in the UK we have a census that takes takes place every 10 years and the census is completed by the head of the household an adult um who’s responsible for the household and our census um for
The last three times for the last 30 years has asked a question about who is the are the people in your family who provide unpaid family care and if there are it asks you to identify their age and then it asks you to identify how many hours they’re caring per week and
So on and so the head of the household must fill this in and basically what the census indicates in the United Kingdom is that between two to 3% between two to 3% of all children are identified as a career within their families by the head of the household and the head of the
Household May well be the person who has the illness or the disability or the mental health problem or the addiction problem or whatever so between 2 and 3% a small proportion and I always argued when those Figures were published that these figures seriously would underestimate the true extent of caring amongst
Children because they rely on an adult telling us whether their child is a carer and if you think about that conceptually there must be barriers to every adult in a household admitting that their child is a carer telling us their age how many hours they care per
Week um and uh and then filling in an official national statistics document that basically tells people that their child is a carer and so what I argued was we had to use a different approach to identify the true extent of caring amongst children and that’s not to ask the adult in the
Household but it’s to ask the children directly and so over the last 15 years or so I’ve done a number of studies two with the BBC the British Broadcasting Corporation which basically asks children to tell us whether they are carers and it asks them to fill in uh a psychometric instrument which asks
Whether they do a whole range of different tasks and if they don’t do any they’re not a young carer and if they do some then they might be a mid middle weight so to be young carer and if they do a lot then they could be what I call
A heavy-end young carer um and when you do that that National survey what you find is that one in five 20% not two to 3% which we get from the Census but 20% of all children in representative samples in the UK identify that they have a caregiving role or care
Caregiving roles plural within their family and then when you look at the amount of care that they provide you can say that one in 10 of all children are providing a lot of care a lot of care each week so the key figures for you to
Remember are 20% of all children in the United Kingdom provide some care and 10% of all children in the United Kingdom provide significant heavy amounts of care and that 10% equates to 1 million children in the United Kingdom 10 million children 1 million children are heavy end young carers and that is three
Children in every classroom in every school in every part of the UK three children in every classroom right across the UK is the extent of caregiving amongst children so this is an invisible and hidden population which paradoxically is not small it’s it’s a massive significant proportion um of all
Children and in a way that sets a model for Canada for Quebec to identify the numbers of young erors by asking children directly you can do surveys in schools in classrooms in youth centers in in Social Services teams in so many different settings to find the proportion of children who will be
Carers what else do we know from research well we know that um family members who include parents grandparents brothers sisters and so on have a whole range of of illnesses or conditions which lead to them requiring care we know that many young carers are young of primary school age so our
Census as identified by parents indicates that children as young as five are providing care and some of those children as young as five are providing full-time care 50 hours of care or more a week according to their parents own admission and we find that too when we ask children primary school children and
Older children to fill in the instruments that we use that you find very young children who are providing large amounts of care we know that um those children are providing General Nursing Care General Care Nursing Care emotional care supervision particularly where parents have mental health problems household management trans
Translating where English isn’t the first language they’re looking after younger brothers and sisters as well as providing care to someone who is ill or disabled and of course they’re having to provide self-care because sometimes the capacity of their parents to provide care is diminished because of their own illness disability mental health
Problems or increasingly in the United Kingdom addiction problems problems with alcohol and drug misuse which have be coming more widespread where children are having to take on caregiving roles for um family um members because of um that those misuses and also we are now identifying young carers in families
Where there is domestic violence where children are having to look after a parent emotionally supporting them or sometimes physically supporting them by getting in the way standing in the way of a violent act to protect in 90% of the cases a mother from violence from another partner and so the issue of
Young carers spreads much more widely than many of us recognize and certainly much more widely than I recognized 30 years ago when I started this journey and around one in three young carers is caring for more than one person at the same time we also know that the outcomes of
Caring on children can be positive and negative at the same time so many children talk about the positives that they have a greater attachment with for the person that they’re looking after that they feel part of the structure the infrastructure of care and support that they feel like they’re Partners in
Caring maybe with health or with social services or with Community organizations but the negatives in many cases far outweigh the positives because what we know from research across many countries now is that we can see clearly that for young carers for many young carers there are educational outcomes
Which include lower grades in comparison to children who don’t have caring responsibilities and lower grades means less chance to get into the best universities and lower grades means less capacity to earn higher income in the paid labor market and so just the simple thing about lower grades casts a shadow
Forward not just in a child’s childhood but right into their adulthood and older age as well because lower salaries is lower contribution for insurance for pensions and so on and so these consequences of caring during childhood span for the whole life cycle not just for childhood and then there
Are the young carers that say they have emotional problems anxiety depression loneliness those who are physically injuring themselves by carrying parents and other family members up flights of stairs getting them out of the bed putting them onto the toilet showering them feeding them and so on and so on
And so those negative consequences are why really we’re concerned about children who are young carers so what we also know from research is why children do become carers and there are a range of different explanations but they’re all intersectional they all interact um so there’s not one reason so
The disability or theill illness of the person who needs care I call the trigger it’s the trigger that leads to if you like a a Cascade like dominoes falling of why children take on caregiving roles and in some families if there’s no other person it’s a lone parent family with no
Other children then the one child that’s available will become the carer and if it’s if there’s two children it might be one will become the main carer and the other one won’t and a particular child is elected into a caregiving role you have sometimes maybe four or five
Children in a family and three or four of them are doing very little and one is doing most of the caring and that’s because of family structure it’s because of the ability of one particular child that might be related to gender or it might not it will certainly be related
To attachment and to love it will be related to who the parent wants to provide that care and so on but at the end of the day it’s also related to the fact that in many families they cannot afford another alternative they cannot afford for someone else to come and
Provide that care so that the child doesn’t have to do it and that issue about how we prevent children becoming carers is one that I’ll return to uh in a few minutes and so one other thing that we have learned and this is the final slide I’ll say about what we know from
Research is that we know that there is now a Continuum of children’s caregiving and this Continuum on the left hand side has caring about so these are the children on the left hand side of that diagram who are really all children in our society and these are
Children who are doing low levels of caregiving it’s the vast majority of our child population they might be doing a few bits and Bobs here and there but effectively they are all children and they’re doing little bits of caring about other family members who might be ill or
Disabled but as you move towards the right of that Continuum you have children taking on more caregiving responsibilities they’re moving from caring about to taking care of of and as you move to the right those responsibilities are getting more complex they’re increasing in regularity they’re increasing in time
The time it takes to do that they’re often increasing in intimacy where we’re moving from household management budgets translation to giving medication to giving injections daily to taking people parents to the toilet to changing catheters and other things to feeding to showering to washing H and all of those intimate tasks of daily
Living and then when you’re on the right hand side of this diagram you have moved from caring about to caring for you are a young carer you’re taking on high levels of caring and responsibility the numbers of fewer around about 10% of all children as I’ve indicated are taking heavy levels of
Caregiving and they are providing substantial and regular aspects of caregiving and help with what we call instrumental tasks of daily life and for many of these young carers the evidence of negative outcomes is not just compelling but it is globally significant in that all the countries that are working on young
Carers are finding these kinds of negative outcomes a study I completed just two years ago was a study of young carers in six European countries with over a sample of over 2,000 young Adolescent carers and it looked at the mental health impacts of young carers across these countries and for the first time
Not only did it show that young carers had higher levels of mental distress than non-caring children consistent across six countries but for the first time it also showed that many of those young carers were in danger of hurting themselves at deliberate self harm is the phrase that we use or frighteningly
Hurting someone else including the person that they’re looking after so these findings were reported in the journals and in news items um two years ago because it’s the first time we showed that the level of mental distress for some young carers isn’t just at the level of anxiety or depression or
Loneliness which they can they cope with especially if they get support and recognition but it goes to that other level of deliberate self harm or risk of harm to other people so the question then is how many children are carers in different countries that’s what you want to know
But I would say to you don’t be distracted by this question and I’ll return to that in a moment but in the UK two to 3% of our children are defined as young carers by the census um 22% a qu one in five is defined as a
Young career in terms of someone who provides some care but 10% are the CH proportion of children who are providing a lot of care unfortunately this slide has become slightly corrupted in the change over but in Canada you have 1.25 million children aged 15 to 24 or from other surveys that have been
Done in other parts of Canada 12% aged 12 to 17 up to one study which showed 27% but the difficulty we have with the Canadian data is that in these figures you’re not including children from the age of five or above you’re including really people age 15 and to 24 or 12 to
17 so these surveys don’t give you an accurate reflection of the extent of caring amongst children so I can’t tell you what the proportion is of all children in Canada who are young carers because we do not know and last night I was talking to Oliver and ell about this
And saying why can’t I have a figure that I can show you tomorrow but I can’t because the age groups are different and the methodologies are different so we don’t know what proportion there are but what we do know is the proportion of children who are carers in other
Countries because they’ve used the method of asking children directly and those proportions vary from 4% in Australia 3% in the United States 7% in Sweden 8 to 10% in Switzerland 10% in the Netherlands um and around 6% in Germany and so on so you can see here that there is an emerging International
Profile which is indicating that really the proportion of children who are carers in some of these countries that have done the work ranges between about 5 to 10% and I would suggest that the figure if you’re like the United Kingdom will be 10% of children in Canada who will be
Providing a significant amount of caring but at the same time I would say don’t be distracted and spend years trying to find out the true figure because it’s a waste of time it’s a waste of energy of resources because it doesn’t matter if it’s 5% 6% 7% 8% 9% 10% it doesn’t
Matter if it’s three4 of a million of children in Canada a million 1.25 million one and a half million or 1.75 million what matters is that you have young carers in Canada who are ignored who are invisible no one is seeing them and not not much is
Happening for them except in projects at Amy Quebec and in uh Niagara and various other places across Canada but the reality is that finding the true number of young carers is a distraction from doing something to support them don’t fall into that trap because that will
Hold you back by five to 10 years so because I’ve been doing this for 30 years I think my role today must be to try and accelerate what you are able to do and to help you avoid the pitfalls that will take you years to get very
Little so in America the reason why there’s only one young carers project in America in bakaran Florida despite the fact that they did the statistics about how many young carers are there 20 years ago when we went to launch that report um they took two to to three years to do
That research and I told them over a breakfast meeting the number of children that they would have by simply working out the proportion and then looking at their population of children and I gave them a figure which then three years later they reported the same figure and
So you do not need to do this unless you really really want to but the trick is to move forward and do something so in the United Kingdom we have extensive research we have public awareness if you ask any Taxi Driver what’s a young carer
They’ll be able to tell you you need to do that in Montreal get into a taxi the taxi driver test and you know a taxi driver test because this is the phrase I use isn’t the Robert dairo taxi driver test where they suddenly turn around and
Shoot you the taxi driver test is does your taxi driver know what a young care is because if they know what a young hair is then other po parts of the population will know as well we have widespread professional awareness we have specific legal rights for young carers and we have young carers
Strategies and so much more so where would Canada be in this so I devised a a scale a classification which shows different country reactions and what we know is that the UK might be at the top of this because it’s got legal rights it’s got policy it’s got National
Strategies it’s got codes of guidance for social workers teachers and so on and we know what other countries look like because we’ve done this twice now in six 2016 and 2021 but where would Canada be would you be at the top of this table in terms of awareness in
Terms of Rights in terms of federal and local policy in terms of awareness of social workers teachers healthc care workers Community organizations lots of young carers projects supporting children or would you be at the lower end of of this hierarchy where countries are just emerging like Japan which is literally
Just starting to develop policies and recognition for young carers and that’s an issue for you to think about so in my last 10 minutes let’s talk about the future um let’s talk about what we’re trying to do in terms of recognizing and supporting young
Carers so what is the task of all of us who are concerned about Young carers the task must be to move children from a position of vulnerability Young carers from a position of vulnerability as defined as providing inappropriate levels of care and what is inappropriate what is excessive care
What is inappropriate care what should a child of five be allowed to do and is that different from a child of 12 the average age of young carers in the United Kingdom or a child of 17 and so we need to move them from providing all of that inappropriate and
Excessive care and the restricted childhoods and education that they have and the reduced opportunities to make friends and to participate fully Etc as children and the KnockOn effect that has into their adulthood we need to red ruce their vulnerability to all those things their isolation their sense that they
Are alone and the high impacts that I’ve discussed we need to move them from all of that to a position of growth to be able to learn to be able to thrive to be able to achieve be protected enjoy childhood be supported be identified be assessed and to flourish as children
Children and to flourish as adults so how do we do that how do we do that in Canada how do we do that in the UK how do we do that in the countries that are engaging with the issue and the challenge of young carers the first
Thing that we have to do is to identify them and to reach them children who are young carers need to have no wrong door they should be able to go to a teacher and a person in the school who is a cleaner they should
Be able to go to a GP or a friend or someone a social worker or whoever there should be no wrong door where they go to say to someone that I’m a child and I’m looking after my mom my dad they have mental health problems and disability or
Whatever and they should be able to do that without fear that that will lead to another set of domino effects where their lives become out of control where social workers look to take them into care and all the other things that might happen and schools are a really good place to
Start the identification of young carers I’ve learned this in the 30 years that if you’re going to start somewhere start in your educational establishments at school at University as well because many of those young carers hopefully will go to university and they will still be providing care
Maybe at a distance so identify the numbers and of students who are young carers or young adult carers and think about how we support them just like we want to support children in classrooms across the land build your services and they will come set up initiatives and
Children will find a reason to be identified raise professional awareness and improve best practice of teachers social workers healthc Care Professionals GPS nurses all of those what we would call the children’s Workforce who come into contact and who every day fail to recognize that the child in
Front of them is a young carer I have spoken to thousands of professionals psychiatrists social workers every professional group you could imagine and some that I didn’t even know existed and I am still surprised when I talk to them that they say oh yeah I just now
Realized that this child that I’ve been working with for the last two years is a young carer and then you think well what did you think they were if you’ve been working with them for two years and I’ve had psychiatrists who told me that they’ve been working with Children and
Families for over a year and have just realized that their child that child is a young carer so never underestimate the possibility that a professional despite our training is incapable sometimes of recognizing the child is a carer within a family we have to raise public awareness and we have to do proper
Assessments of need and the ability that children have to provide care so sorry I realized then that I hadn’t I got so excited with of that I forgot to move the slide on anyway so now you have the next slide purpose um so what is the
Purpose of what we do what are we trying to do well I would put it to you that there are various things that we should be trying to do one of them is that we could consider whether we want to prevent children from becoming carers and if we want to prevent children from
Becoming carers um then we need to think about how to support the ill and disabled people more the health services the Social Services Etc or is it that we’re trying to reduce the amount of caring that a child does that would again require us to renegotiate the caring roles and responsibilities within
The family so that children or some children do less and other people do more including outside agencies or is it that we’re trying to intervene to get children to be better adjusted to their caring roles to do better at school to have better health mental health to get to University and
Do okay at University and so on you know is it about enabling them to navigate through those complexities or is it about having a better care life balance and so you need to think through what is it that you’re trying to achieve by any service or intervention that you develop and you
Need to devise and we need to devise and to deliver what we call outcomes focused Services services and interventions that have a specific purpose to deliver one of those things and in a little bit Oliver will talk about those things because the things in Brackets with the quote marks preventative mitigative
Assistive are phrases that Oliver uses in his presentation and those others prevention reduction intervention Etc phrases that we use in the UK so what should we do that will really really make the difference and so now I’m on my last slide much to the relief of the
Timekeepers in the session which is 16 actions that will turn the dial 16 things that if you think about and you try and do you will cut out years of waste you will be truly looking at the evidence from 20 to 30 countries who have done the work before you and you
Will save years by following some of these um if you like uh tips so let me quickly go through this because I’m sure you can’t read them but you need to focus on helping individuals cases and you need to be advocating for system change causes case and cause
Advocacy your best ambassadors will be children and young adults who are carers or have been carers themselves their voices will be the most powerful voices to change policy to influence the public and to get a better deal for young carers you need to grow your research so
That you have more surveys more studies but don’t be distracted raed by doing so much research that you forget to do the other 15 things on this checklist you need to have a cross Canadian a panc Canadian rights-based Covenant for young carers saying clearly that young carers in Canada young carers
In Quebec have the following rights and many of them are already enshrined in the UN convention on the rights of the child which you have signed up to as a nation and which say that children have a right to be heard to be listened to to
Have a voice and so on you need a panc Canadian Alliance a coalition of the Willing of the organizations that support and want to support children who are carers and including people with disabilities mental health and so on you need to find your allies and work together you need to Challenge and nudge
Policy makers funders and service providers to be better you need to use the media the media is critical to moving this forward for public opinion last night in the UK there was a documentary seen by I think 12 million people uh 30 minute Prime Time documentary on young carers um and these
Are the things that move things forward you need to make Young carers issue for schools for higher education for employment how can we get employers to employ young adult carers who are 21 22 if they think that person will be unreliable because they have a caregiving role at home so we need to
Make sure that employers are carer friendly as well we need to highlight the negative outcomes the Lost opportunities and the costs that I’ve described for children but also for nation because this is a generation and it’s a continuous set of generations of children who are to some extent
Lost because of the consequences that carry forward from their childhood into their adulthood you need to link everything I’ve said to the core Canadian values of fairness of equity of Justice and of social Mobility that we want people to have a life where where they started as children doesn’t mean that that will
Determine where they end up as adults and for young carers where they start as children often means that they will end up in a particular place because of everything I’ve said so the cause of social mobility and social justice and fairness is inherent to what we do for for young
Carers we need to develop the services start the services and young carers will come because why would you come and identify yourself as a young carer if there’s nothing out there for you I wouldn’t want to identify myself if I thought that there was no point and
That’s the same for many young carers they will come if there’s something worth identifying themselves for you need to have a system to assess their needs you need to design those outcome focused Services you need to find out what works what works to support young
Carers why does it work and you need to celebrate the difference that you’re making for individual lives and for the Cs and if you really want you can take those 16 items you can put them in the self assessment checklist and you can ask yourself the question for each one of those 16
Items have you started on that journey I can’t have you already started to move forward or are you just about emerging to use the media to do this to do that and if so you’ll put a tick in the First Column or are you already developing those actions
Nicely is this a good work in progress and you’ll put a tick in the second column or are you so well established in doing that that this is now business as usual and you’ll put a tick in the third column and you might want to do that as an exercise
Collectively where are you in Quebec on those 16 items of actions that have been shown around the world over the last 30 years to make all the difference for young carers and if you move forward on some of those or a lot of those those you will save yourselves
Years when I started researching and working on young caras I was probably Oliver’s age and now I’m in my 60s and it has literally taken such a long time to get things moving in the UK and in the world so save yourself some time and enjoy learning from other countries and enjoy
Teaching other countries what you can achieve in Quebec to make all the difference for young carers thank you very [Applause] Much awesome thank you so much Professor Becker um I wanted to make sure that we had time for question and answers because I I don’t know if I’ve reiterated for you today how excited a lot of the people in this room were that Saul is joining us here in person um I I
Was very proud that we got to have him here I’d love it if um people here can have questions maybe come toward um Greg has a mic there that I’ll come and get and I’ll bring the mic to you if you just raise your hand and then in the
Chat as well for those joining us online if you write in the chat your questions I’ll field some of those as well thank you so there’s a person uh over there hi thank you so much for that speech I thought it I mean it’s really important work is everyone hearing me
Yeah yeah um I know noticed that you you touched on some families not being able to afford certain types of care and one of your graphics showed culture as well so I was wondering if um any of your research shows that maybe children of that are more intersectional and part of
Cultures that are that value interdependence in the family are more at risk of being young cares I mean at risk are more likely to be and whether or not they experience more negative outcomes because of the cumulative effect of their minority group thank you thanks for that question so the question
In case not everyone heard it but I think you probably did was about intersectionality and about indigenous populations and what we know from research in other countries um but also from policymaking is that the issue of intersectionality which is the combination of race of gender of Family
Birth order of um well it’s a combination of really everything culture socioeconomic uh status and so on is absolutely critical here because you can’t explain why a particular child in any family is the carer without thinking about all of these different intersectional uh issues um so that’s at
The core and I know that Nick has told me that that’s the area of his PhD which um which I’m really looking forward to reading we also know that in indigenous populations particularly in Australia and in New Zealand the issue of young cares is really uh even more invisible
And it may well be the case I suspect here in Canada as well um so the um the challenges of children in indigenous populations looking after parents who have an illness or disability mental health problem or particularly in the uh in the New Zealand cont context um of uh
Alcohol or drug misuse um are well known um anecdotally but not well researched so there is an article that’s been published recently about this from a Canadian context which does talk about that but there isn’t terribly much research but what we know from conversations with people in those
Populations and with policy makers and social workers and practitioners is that despite a lack of research there are real issues of invisibility and the hidden nature of children caring in indigenous populations which we need to really think about what are their specific needs um how does culture and all those other intersectional aspects
Fit together and more importantly what can we do to help and support them which does not add to other stigmas that those families already experience through various other systems that don’t respect them adequately thank you hello hi thank you very much uh I’m a director of a Montreal caregiver
Organization and we’re running from since January a project for the Youth caregivers in schools and my question is really specific but I because we we were really uh uh all your research and all what’s happening in UK is really ins spiring us over how to deal it here and
My question is how a local project or a regional project as the one we’re running how can we affect uh significantly the political of provincial of or uh federal laws over the caregivers how to have a real impact in fact thank you that’s a really good question the first question was really
Good as well um so how do you how can you have an impact on um federal or local laws um so some of the 16 points that I raised were really very much trying to address that particular issue you have to have strength and you have to have
Power and influence and one of the ways to do that in terms of policy making and policy change is to have an alliance which has a loud voice so an alliance of organizations or a coalition of organiz ations that come under the umbrella of one organization but it creates this
Coalition um with multiple members who are interested concerned to do something about young carers but also at the same time to respect parents who have an illness or disability so it’s not a carers Lobby versus a disability Lobby it’s an alliance that brings these things together because one of the best
Ways to prevent children from caring is to provide better Health and Social Services to the person who needs care but we’re never going to be able to prevent all children from taking on caregiving roles so an alliance with a strong voice which has Authority and which cannot be ignored you also must
Have the voices of young carers within that Alliance and you need to amplify the voices of young carers so if you’re going to not do years and years of research about this little minute issue or that minute issue but trying to get young carers onto the political agenda of Education Social Services Health
Community Services youth services and so on the best way and we’ve learned this from across Europe and in other countries is to give young carers the platform enable them to be the voice because when they speak particularly on tele ision on radio and so on you cannot
As a policy maker say they’re lying you can’t say actually I’ve heard that voice but we’re not going to do anything because we’re not bothered or we don’t care so you have to nudge policy makers into action by showing them the voices of Young carers and the Testaments and
Narratives so for me you make a political impact is do some research but don’t get bogged down in it give young cares a voice and make every effort to give them a platform to speak and don’t just stick them on a platform and hope it’s all going to work out make sure
That you’ve given them the opportunities you’ve given them a bit of training you’ve given them the confidence you’ve shown them and spoken them and you’ve rehearsed some of these things because we would do that as professionals so don’t just dump children into that Arena and hope it’s all going to work out it
Is very much about using those kind of models in the UK and in the United States there is something called Community organizing I think you have that as a thing in and so I’m a community organizer in the UK and and we’re using principles of community organizing here to provoke reactions the
Only way you get political change and policy change is to provoke a reaction amongst the powerful and you provoke a reaction because they can’t ignore the voices the evidence and the the sort of power and authority of a collection of people coming together that’s how you deliver change thank you thank you well
I’ve never had a lineup of questions like this it’s it’s all it’s a very surreal experience maybe I’ll say just I’ll just ask that the the people already at the back lined up will be the last of the questions for inperson um I’m here all day yeah yeah
We’ll be more that sounds like a joke a sort of joke line really I’m here all day so I’ll answer quickly forgive me if my answers are much shorter now yeah okay please hi thank you um I would like to know if there is any study showing if there is an
Intergenerational transmission of being a yerer and if yes what will be the implication for the policies for support thank you thank you so I think um you you asked is there an international transmission of policy and practice no ENT sorry ental transmission of being a y carer that mean a a you
Across Generations oh yes okay so thank you forgive me that I uh excuse um so there is I mean what we know from families where um there is illness into disability that’s been in the family for many years is that um being a carer is normalized within families um children
Get socialized into these roles so that they don’t see it as anything unusual particularly um and so there is an intergenerational uh transmission um but it’s not in a negative way because actually the transm that transmission of a compassion and a will and desire to care for your family
Members uh and to care for strangers is something that we should all be encouraging it’s really in that Continuum of children’s caregiving it’s on the left hand side we should be encouraging all children to care about other people strangers as well as family members um but there is an
Intergenerational uh transmission and In some cultures work I’ve done in subsaharan Africa is very clear that you know there is an expectation that children will care for other family members when they become old when they become frail when they have HIV or Aids um when they have disabilities and those
Children will not just take on caregiving roles but will also provide the main source of income because if the parent can’t work then children have to replace family income as well as being carers and that intergenerational contract as it’s referred to in African culture is really uh important so there
Is evidence um that this does get transmitted but at one level that’s a good thing not a negative or deficit thing thank you thank you hi hi um sorry thank you so much for coming to speak today first of all it was really inspiring and my question was
That well I work in a nonprofit that uh works with people who are caregivers of someone with a mental health problem and recently in the past year we’ve established a new program specifically for young caregivers uh to receive like services like such as counseling for
Example and uh in one of your points you were saying that uh establish those services and they will come forward to like kind of receive them but that’s not really the reality we’ve been having at our organization in the past year it’s mostly like young adults who come
Forward to receive like that counseling and we’ve been having trouble reaching out to like younger caregivers and we start their services from the age of 12 so we’ve not been having as many like uh children and so I’ve been wondering if you have any advice specifically to like
Uh have those younger population come forward to receive uh those services that we offer thank you that’s a really good question as well so look it’s really difficult for a child of 12 to identify in their life experience the value of counseling because even the phrase counseling isn’t a child-friendly
Uh phrase It’s a professional phrase it’s like the word assessment you know we talk about you must assess young carers well children think assessment is an exam they think it’s something that takes place at school with coursework so the language that we use is part of the
Problem for some children and so the reality is that yeah I can see that there would be an issue that children might not recognize what counseling is they might certainly not think that it’s got any advant an ages for them they might feel that uh identifying themselves and receiving counseling
Could be quite stigmatizing their parents May certainly not want them to receive counseling because it labels the family in a particular way that the child um needs counseling because the parents maybe are not as good parents as so you have a whole range of challenges I would suggest that one of
The best ways of dealing with that challenge at a system level is to have an aware aess raising campaign in Quebec and I would suggest that you do that and I suggested this last night you start to publicize what Young carers are across a range of different places on bus stops
In PL in doctor’s surgeries in hospitals and so on um saying you know with a picture of a child different children different uh ethnic backgrounds Etc um simply saying very simple things like my name is whatever I care for my mother with a mental health problem my name is
Another one my brother has a disability and my mom um uh uses a wheelchair etc etc very simple images images are more important sometimes Than Words which confuse children they will identify with an image even if they don’t know what counseling is and literally have a campaign across the city which shows all
Of this and then with a place where young carers can contact not multiple different agencies but an either an Advice Line a help line or a project in which they can go and see what happens and if you want to discuss it further and I can give you more ideas just email
Me and we thank you so much it’s a pleasure hi hi um I’m I’m one of those words that confuse children I’m a counselor um and I work for an agency that supports um I guess young carrots that are impacted by addiction or substance use and one of the things that
I found were um a lot of young people come with substance they’ got in trouble because they were caught with drugs or they were using drugs and um we started adding this question because of the first Symposium um where we ask everybody do you spend a lot of time taking care of
Someone that you love and generally the response is pretty um cautious pretty uh um yeah it’s cautious and and I think you know when we talk a lot more something I’ve discovered is there’s an incredible amount of stigma around uh being a young carer especially around child
Protection and when I heard you talking about those surveys that you were uh doing um I was wondering you know what what question did you ask young people um and do you have advice around um our questioning we we we put that question every intake we do with
Young people but I’m wondering if that’s an appropriate question if we could use different words wording or procedure or something like that thank you um so this is a real challenge because identifying children who are looking after parents with substance misuse um because of the stigma and sometimes the
Illegality so you know in the UK um um the kinds of uh let’s say say substances or drugs that uh parents might take um some of them might be legal um here but many of them uh are not and so to identify yourself as a child looking
After a parent who’s misusing an illegal drug is incredibly difficult and in a way why would they want to be identify because they don’t know whether your intervention will be benign and helpful or whether it could then involve uh Child Protection agencies or even the police so there is that stigma and there
Is a real fear of what might happen so in a way it’s it’s quite difficult to be so specific about do you care for someone who misuses substances um in a way it’s probably more helpful to go the generic route which is do you look after
Someone who has a need rather than do you look after someone who misuses substances um and from that you might then discover the children who uh are looking specifically after substance misusing parents or other family members I mean the the boundary with child protection is really complex I had cases
Where um some kids were used to score for parents so some young carers were sent out to get the drugs by parents and of course that becomes a child protection issue um but what I would say is the generic route we do have an instrument which is translated into
French as well as English which is used in 20 countries called the MAA it stands for the multi-dimensional assessment of caring activities and it’s an 18 item self-report instrument which I’m sure you can get from Oliver and Ella or just email me directly could you say that one
More time it’s the Maca the multi-dimensional yeah assessment of caring activities it’s a psychometric instrument used in schools in hospitals in community organizations it takes two minutes for a child who’s to fill in it can be used to assess a young carer’s caring roles what they do and also the
Amount of caring that they do and it can be used as a screening device in schools or other settings um to identify young carers because if they answer yes I do a lot of these then you know that they’re a young carer you could use the Maca to help you navigate through that
Particular issue and then there’s the Pano another self assessment which is the positive and negative outcomes of caring questionnaire the positive and negative outcomes of caring questionnaire which is a 20 item scale which shows the positive adaptation to caring of children and the negative adaptation and in that questionnaire
There are a couple of questions which are very much clinical questions which are about the future safety of the child so there are at least two instruments specially designed for assessing and for identifying the strengths and difficulties of young carers which in clinical practice would be really
Excellent and they’re also in French oh awesome thank you thank you hi hello I work as a student Advocate within a university and one of the main things we do is help students and advocate for them and getting them various accommodations based on their different needs and situations so my
Question is what types of accommodations are recommended for University students who are carers okay thank you so um the issue for many young carers in the United Kingdom particularly at my University Manchester Metropolitan because we’re a very um we’re 42,000 students we take most of our students
From low-income families um it’s not an elite University like Cambridge where I used to work it’s very much about first generation students lots of students from Minority communities and a significant proportion of those students actually don’t live at University they they chose Manchester met because it’s
Close to home and they go home at night to care and at the weekends you know they’re there um but for those students that come to University who are living away from home um some of them will choose to go as far away from home as
Possible to try to break some of that link because in some cases this can be very problematic and it’s an Escape okay but in other cases young haers will live as close to to um their home lives um as they can and so having a hall of residents or accommodation particularly
Where they might get to know other young carers would be really good because what they don’t want is to have to start to narrate their lives to people who have no understanding so the great benefit of young carers projects is that you don’t have to start from scratch because
Everyone in that room when you’re doing a group session is a young carer they know what’s going on you don’t and that Mutual peer support is so critical so it’s not necessarily about where they live at University it’s about who they meet and what support you provide at
University so make sure that you have a support system for young adult carers make sure that they can meet and know that they’re not alone make sure that they recognize that other students are going home to care at the weekends which is what I did in all holidays to give my
M A Break um make sure that your systems are sensitive and flexible so that if a young care is falling asleep in class or can’t get to classes sometimes or is not able to hand in their assessment um their coursework and that sometimes there’s flexibility um have contextual
Admissions processes so rather than just doing it on grades the UK system has moved to contextual admissions which is that people write a narrative about who they are and we can look at their backgrounds whether they are care experienced they’ve been in local Authority care whether they’re estranged from their
Family whether their parents whether they’ve been fostered or adopted whether they’re young carers because that gives us a sense of who they are but also what they bring to the university and the opportunities but again there’s a massive amount of research and Publications and guidance on how universities should better support
Students and if you want me to give you access to any of that simply email me and I’ll give you the sources thank you so much pleasure hello hello can you hear me okay I can thank you hi uh my name is shanu uh I work for a What’s called the
University Institute Sherpa here in Montreal uh and we’re currently working on a provincial project research project with migrant populations and English speaking communities in Quebec and in the research we’re finding out already that there’s you know we talk about intersectionality uh that you know we’re seeing people be invisibilized based on
Status uh and so my my question to you is do you have any information uh on uh young carers who are perhaps taking care of their family members or someone in their network uh who don’t who have precarious status in this country we have 500,000 people in this country that are
Undocumented uh from different parts of the world and so I’m just curious about any research information on young carers in these particular contexts of Migrant populations thank you um so there is there is research published on this and if you go into Google Scholar and put in
Some keywords you will find some of those articles what we know again is that um you know if young carers are invisible young carers in migrant um or Asylum seeking families are undocumented are even more invisible for so many reasons of you know illegal status etc etc stigma blah blah blah they are
Really difficult to identify for very good reasons and most of them probably don’t want to be identified because they have no idea what will happen if you know about them um and so you know we can understand um what’s going on there but all I would say just as a sort of
Aide to that is that from evidence of talking to practitioners and to families um children in migrant families and Asylum seeking families um we do know that this is increasing particularly as Alis started her presentation and acknowledged the state of the world at the moment so children living in
Families where there is armed conflict children who are live uh living in families who are um trying to escape from one country across the channel say to the UK and you will have seen no doubt the news reports of thousands of people drowning in in the Mediterranean
And other places and those that do get to land um whether it’s in Italy in lampedusa or in the UK and the Kent Coast or in France in Cal or wherever it might be those children are providing significant care whilst traumatized themselves to families and parents and brothers and sisters who are themselves
Profoundly traumatized many of whom will be injured from conflicts etc etc so for me um this is a really important issue um because it’s a it’s an issue that is a barometer to some extent of our common humanity and decency um and it needs far more research but it’s a thing it’s an
Incidence that I think is going to get worse and worse so you even have to have kids and families coming across water you just have to look in water on areas you know um yeah you where where children will be carrying the load of caring emotional support physical
Support medical support um and we know so little about this so any projects that are specifically dedicated to that are absolutely honorable and important but you are treading in an area which is so difficult to actually do any anything in terms of identification so again build a service ensure it’s advertised in the
Most nonstigmatizing non-judgmental neutral compassionate humanistic social justice way and one will hope that some of those children will be willing um to be identified thank you thank you I’m afraid that’s it um so um I thank you thank you for the extra time that you’ve uh you’ve given
Me today so it’s been a real pleasure I am here all day so if anyone wants to speak to me later on please just come up and uh and grab me thank you very much