Caregiving Around the World Panel Discussion

This week's panel discussion unveils the hidden reality of caregiving youth worldwide. Representatives from the US, UK, Canada, and Australian organizations discuss the significant challenges young caregivers face, including lack of awareness, cultural barriers, policy gaps, and limited access to support.

The panelists, each with their unique experiences and insights, share a wealth of knowledge about the needs and experiences of young caregivers in their respective countries. They underscore the importance of early identification, culturally sensitive services, and policy changes to better support this vulnerable population.

Despite the challenges, the discussion highlights the strengths and resilience of young caregivers, who often take on adult responsibilities to support their families. This episode provides a comprehensive overview of the global state of caregiving youth support and the critical work being done to empower and advocate for them.

The panelists invite listeners to support their efforts through donations and awareness-raising initiatives. They emphasize the importance of recognizing and aiding caregiving youth, who play a vital role in their families and communities.

International Panel:

Andy McGowan, Carers Trust (UK)

Madeline Buchner, Little Dreamers (Australia)

Chelsea-Anne Alex, Hospice Toronto - Young Carers Program (Canada)

Connie Siskowski, American Association of Caregiving Youth (US)

The sisters proudly partner with the Caregiver Action Network. CAN's Caregiver Help Desk offers free support to family caregivers via phone, chat, or email Monday through Friday, 8:00 am - 7:00 pm Eastern. Get answers, resources, support group info, or a listening ear. Visit www.caregiveraction.org/helpdesk/ or call 855-277-3640.

Transcript

Natalie: 0:03

Hey folks, it's your favorite sisters here with the Confessions of a reluctant caregiver podcast, this episode is part of our special series caregiving youth hidden in plain sight. We're partnering with my care friends to feature organizations who offer services and support to millions of our youngest caregivers worldwide. Now let's listen in as we learn more about these amazing organizations. I am Natalie handy, and we are here today with our special series caregiving youth hidden in plain sight, and I have a special co host today, the amazing Todd Keats, he is with my care friends, and he is our partner offering this series. He has given JJ a break from the sister. I think she wins. But Todd, we are so happy to have you partner with us on this special series.

Todd: 1:00

I love partnering with you and JJ. And I just want to, I want to know, yesterday I was the favorite, but now JJ is the favorite again. Well,

Natalie: 1:09

I don't know how JJ is. Well, she's the favorite sister. You're clearly our favorite brother. And just so our guests know JJ and I don't have brothers, so we now everybody becomes our favorite sister. Everybody's our favorite brother. We don't discriminate. Everybody's included. But today we have an educational episode. We have, this is the first educational episode in the entire series, and we have an amazing group. Todd,

Todd: 1:32

we do. We do. I've been so excited for this for months, so let's, let's kick it off.

Natalie: 1:38

Let's jump right in. Todd, why don't you kind of share just a little bit about who's in the room and for our audio listeners, oh

Todd: 1:45

well. We have Connie siskalski from the American Association of caregiving youth in the US. We have Andy McGowan from carers trust in the UK. And we have Maddie. Oh my gosh, Maddie, I I'm gonna mispronounce your last name, Maddie. Would you say your last name for me?

Unknown: 2:09

It's Buckner.

Todd: 2:11

Buckner, okay. And we have Maddie Buckner from little dreamers in Australia. And we have Chelsea with The Hospice, is it of Toronto, in Toronto.

Natalie: 2:26

And so let us get started. And the guys the way this is going to work for our listeners and our viewers. We've got six questions. We are going to round robin to everyone. And so everybody from their respective country is going to give you line of sight. And so we're going to start off with the first the first question, which is, and we're throwing it straight to Connie with the American Association for caregiving youth. And Connie, why don't you start off by telling us about the organization and the benefits that you all provide

Unknown: 2:57

to caregiving youth. Well, thank you. And I didn't realize it was going to be in the midst of sibling rivalries, my goodness. So our organization actually began as Boca Raton interfaith in action way back in 1998 to provide volunteers to people who were homebound and caregiving families. After my research for my doctorate degree, discovered a large population of children in schools who were caregiving and the impact on them, the national study documented that, and in 2006 we began the first ever caregiving Youth Project in our country. So it's kind of unique in that it works between systems of healthcare, education and the community, because those are the three areas of impact when you provide assistance to someone in your family who is chronically ill or injured or elderly or disabled, we begin with kids in sixth grade, and we do a screening process so that we're using our limited resources for the children who are doing the most care. And we work in partnership with the school district here in Palm Beach County, which is the 10th largest in our country. So we identify the kids in school, and we provide a curriculum that we have copyrighted, that goes from sixth grade through 12th grade, that's graduated. One of the unusual things is that we do a home visit by our social workers, because we know that it's impossible for children to learn if they're under stress, and so the more that we can focus on reducing the stress of the child, including reducing the stress on the family, has a ripple effect to help the child, and then it also on. You know it, your brain is not developed yet, until you're in your, you know, early 20s or so and and having fun is an important part of brain development and learning to work in teams. So we provide activities. So we've helped about 2500 kids through the years. And one of the unique things too is that, you know, we we continue with them as long as they're caregiving. So from sixth grade through 12th grade is seven years, the average that kids are in our program is about five and a half years. And our high school graduation rate average over 10 years is 98.3% which has an impact, not only for the children and their family, but also for society, because when you become educated, you can earn more taxable dollars, and you don't become system dependent ultimately, wow,

Natalie: 5:56

that's fantastic. Andy, let's go to the UK.

Unknown: 6:00

Thanks very much. It's really great to be here. Well, it's this evening here. It's a late at night, but so I'm from a charity called carers trust. So we are a national carers charity that operates across currently, sort of three parts of the United Kingdom. So we operate in England, Scotland and Wales. And so we're trying to improve the lives of carers of all ages, and parts of the way in which we do that is we're also got an umbrella organization for local carer services. So in the UK, we're really blessed and fortunate that we do have lots of support services for young carers, and so we have a network of about 130 different independent local charities, local young carer and carer organizations across the country who are sort of providing the support on the ground. So it might be providing information and advice, it might be running young carer support groups. It might be providing employability supporters as well. So our role is really to support those local carer organizations to be able to do what they do best. So to be able to provide that support to young carers and their families, and in relation to carers of all ages, our network reaches around about a million carers each year, and our role also involves things like providing grants. So each year, we give out grants to our local carer services to give out to young adult carers, to adult carers. So that could be things that, for for example, like a bed, a replacement dishwasher, a bike so they can get to college as well. So really tangible things that make a massive difference. And in addition to the actual support side, we play a huge role in trying to influence government to really sort of improve the lives of carers of all ages. And we do a particular a lot of work around young carers, so trying to improve the support that's available for for young carers in school, trying to make sure that no child is having to take on caring responsibilities which are far beyond their years as well. So we do put a huge amount of effort in to work in Westminster, with our main Parliament there as well.

Natalie: 8:13

That sounds wonderful. Why don't we go back across the pond and let's go to Canada. Hi,

Unknown: 8:19

Natalie. You're so happy to be here. So I'm Chelsea, and I work for the young carers program through hospice Toronto. So our program originated. I know being attached to a hospice is a little bit uncommon, but it originated when our people were going into the homes of these palliative clients and finding children and youth in those homes and recognizing that they were also in need of support, as well as other caregivers that might be in that home as well. And so that's where we sort of started and expanded from there to include all different types of young carers. So what the young carers program does is we run therapeutic and recreational peer support groups for children and youth who may be in a caregiving role for a family member so that could be with a life limiting illness, a chronic illness, disability, substance abuse or mental health concern or even other socioeconomic barriers, like in language barrier. And essentially, what our programs do is bring these caregivers together, sort of recognize those roles that they're doing. And we run lots of different types of programs. So whether it's respite workshops that work on a specific skill that'll help them with their caregiving role, like cooking or with homework support, we run things like that, as well as free summer camps, which are a little bit of a mix of everything and outside of our regular program, we do what we can to also support young caregivers, whether that's awareness projects trying to improve recognition in Canada, as well as refer families to any other resources they think they can benefit from as well.

Natalie: 9:54

That sounds fantastic. I love that hearing a little bit of differences between each of you. And there's similarities, but a little bit of uniqueness in how you're looking to respond to meet the needs of our young folks. And so let's go to tomorrow. I mean, Australia. So Maddie, how about you tell us about what's going on down under? I know That's so cliche, but honestly, I'm sorry I just could not get away with it. So Maddie, let's talk about what little dreamers is doing.

Unknown: 10:22

It's okay. The down under jokes go down well here as well as well as they go down over we are I run an organization called Little dreamers. We are Australia's leading young carer support organization. We're also known as a peak body in Australia. So we do direct service delivery and political advocacy and community education. So we were born out of a gap in the Australian community where there was no direct support for young carers. I need to remember to call them young caregivers, because you guys in the US call them young caregivers, but we in Australia call them young carers and little dreamers. Works with young people as young as four years old, right through to 25 so across the entire caring spectrum. And we try and do that because we try and get in in a preventative, proactive space. So we want to make sure that we're supporting young carers from an age where they become a carer as much as we possibly can to reduce some of the long term impacts that we see that young carers have, including unemployment, educational disadvantage, financial disadvantage, we kind of work in that space to prevent the long term side effects we see and risks of being a young carer. And 65% of our team who lead our organization have lived experience. So we're really driven by that lived experience of being a young carer to create and run our programs. We run programs that range from short term one off opportunities like dream experiences very similar to make a wish, and where we get young carers out of the house and give them the opportunity to go in a hot air balloon or stay at a hotel or run onto the ground with their favorite sports team, right through to long term leadership programs, tutoring programs. We do overnight camps, we do education programs in schools. We have a young care advisory board, so we kind of try and improve the quality of life of young carers as a whole. Last year, we delivered just over 14 and a half 1000 hours of direct support service to young carers. So our organization is much larger than I ever thought it would be, and the young carers that we have do tend to join our organization when they're kind of six, seven years old, and they stay right through. So we have a young carer who joined our organization when he was nine, and he's just become a leader in our organization at 19. So it's very I feel like a proud mum all the time, and I get to hang out a little during this program.

Natalie: 12:51

You know, I think most people would not expect caregiving at age four. I wouldn't I know that Connie there was a the AAC, why was featured on The Today Show yesterday morning, which is funny today yesterday, and one of the hosts said, I never knew. And that's the thing is, that's why it's hidden in plain sight. So you know, let me ask you this. I'm going to push it back to Connie and say, you know, what are some of the biggest challenges that your young caregivers are facing that you see that they're facing

Unknown: 13:24

they have so many challenges, but one of the biggest ones is just a lack of awareness of what they're doing. So not that long ago, we had one of our students had to take her mom for a procedure before school, and she was late, and the teacher didn't ask, why are you late? And instead, just gave her detention. And so because the subject is not included in any curriculum, you can't expect people to know what they don't know. And so that's a really big challenge for the kids. And I think also another challenge is the changing of our population and having many families that are undocumented, so that there's resistance to having help at home, because we do provide respite and to mother in home services, as well as there's a fear by the families, that if people on the outside knew what the children were doing, that they would be removed. And even one of our congressional representatives who I met with said, well, Connie, they shouldn't be doing this. They should be in foster care. And you know, again, it's from lack of knowledge, because, you know, you take the child, and there are some states that have old laws that allow the child to be removed if a child protective service worker felt that that was the case. But then, you know, it's, it's like, not logical, because who's going to take care of that child? And then. Who's going to take care of the person that they were taking care of? And I think right now, we're in a time and a climate of some increased violence, and there's fear, not the sometimes the kids who live in poverty, you know, can't go outside to play, so that's difficult, as well as affordable housing, that we've had a lot of increases in rent and taxes and and money and that's needed to live. And so families are challenged, and it spills over onto the kids without having the economic resources to be able to provide, and so they've tried to find creative ways to survive. So for instance, one of our families lived in a it was a mom caring for her grandmother and a couple of kids, so they had a three bedroom apartment, which they could afford, but as the landlords raised the rent. They could no longer afford that so and they had no place to go, they would be homeless. So instead, they all moved into the master bedroom and then rented out the other two bedrooms in order to survive. Those are just real life challenges that these children face. And as I had indicated, initially you can't learn when you're under stress. And so I think feeling stress, and particularly if you don't have that support, is a real challenge. Academically.

Natalie: 16:34

Very good points. Connie, very good points. Andy, what are you guys seeing over in the UK? Yeah,

Unknown: 16:40

I think I definitely want to sort of pick up where Connie left off, around the point, around recognition and so young carers not realizing that they're young carers. Because I think what we see here in the UK is so often they don't see it as a young carer. They just see it I'm someone's brother, I'm someone's sister, I'm a daughter, I'm a grandson, whatever that relationship might be. And so that's where it's incumbent on the professionals in their lives, the adults in their lives, to actually say, instead of, hey, actually this isn't the situation every child's in, because, as Connie says, that they only know what they know and they don't know what they don't know. And so what that tends to mean is we often find young carers go many years without getting any support. I think if we compared to sort of internationally, we are really fortunate. There is a lot of support services here in the UK for young carers, but we find that on average, it takes around, sort of three years from from when someone starts caring before someone says, Hey, actually, did you know that there's something called a young carer and the support available? What help do you need? And we did a survey last year with young carers, and we heard from a couple of young carers, where they said, so they started caring when they were six, but only got identified and linked into support when they were 16. So they went now whole school lives, trying to just balance that caring and learning on on their own. And so what we tend to find is there are three key areas that young carers say it has the biggest impact. One is on their education. So trying to balance their sort of caring situation at home with still being able to do their homework to get to school on time. So like Connie said, in terms of maybe having to do their caring responsibilities first thing in the morning and then go on to school, or take a younger brother or sister to school, and then in terms of we find when they struggle to balance the two, that has that impact on their mental health. So time and time again, we hear from young carers where they're feeling stressed, they're feeling anxious, they're worried when they're at school about the person they're caring for. Has Has mum remembered to take a medication? How did dad's appointment go? All of those sorts of things that their friends just haven't got to worry about. And then we also find that they just miss out on the opportunities that their friends sometimes take for granted. So something as simple, so we're just about to come up to our summer holidays here. Sorry, Maddie, it's summer here, and so so whilst some of their friends might be going to the seaside in the summer holidays, or they might be going on holiday or things like going to the cinema, for so many young carers, either they don't get an opportunity to or they can find that route that plans get canceled last minute, they might have had it all planned to go on a trip out as a family, but if that Morning, mum's not feeling great, or actually their their autistic brother is just having a really difficult morning. Those plans go out at the window, and I think those are some of the sort of key areas and sort of key challenges that we see, and we are sort of seeing that has a long term impact, so in terms of their access to higher education. So to go and get university degree, ability to get a job and just make that transition to becoming adults, and I think that's what we're starting to see here in the UK, is that sort of data sort of really showing it's not just the impact here and now, but also the longer term, which is why we're in so much to try and get more recognition and support. Mm.

Natalie: 20:00

Yeah, that's insightful normalcy. That's what we in the mental health field and foster kids, we're always trying to help our folks find normalcy. And that's what I hear is lacking, and I think that's probably universal. Chelsea, how about you? Share with us what's going on there? Yeah. So

Unknown: 20:16

compared to I the UK, especially in Canada, we don't have near as many supports for young carers, and I think that's one of the biggest challenges. So kind of jumping off what Andy said, there was a Canadian researcher that coined the term the young care penalty, and what that sort of refers to is the long term impacts of being a caregiver, young caregiver, starting at those young ages of even five or six, and how it impacts their professional careers, their education and their mental health on the long term. And you know, that's where sort of the programs like myself and a little dreamers come in, where having these supports early on in life can sometimes help with that long term penalty in terms of giving them the coping skills, reducing isolation and helping recognizing all that work they're doing, and just giving them that little bit of support to really give them that successful lift off into adulthood, which We really need, because the penalty does impact the youth or young carers are less likely to pursue post secondary education, get better paying jobs, and are more likely to develop things like anxiety and depression if they don't have that support early on in life, and especially In Canada, you have over 1.2 5 million young carers, and that's only starting at age 15 in those stats. And we maybe have a like saying we have 10 organizations that support young carers across Canada would be a stretch. We are definitely the only one in Toronto and the GTA right now providing support. So I'd say some of the biggest challenges that you face in Canada outside of you know, the first hand impacts of caregiving is similar to what Andy was saying was that recognition and awareness, and then once they get that recognition and awareness, the lack of community support to support them. So we really need more funding and more organizations to build young cares programs so that once these people do get or youth get recognized, they have somewhere to go to and be referred to and get that support, they need to help with that liftoff.

Natalie: 22:32

Wow, wow. Like, lucky if you've got 10, that is, that's a very big number in the sense of that's big, because you're missing so many people Maddie share what's going on down in Australia.

Unknown: 22:46

The thing that I love when it comes to talking about young carers with people and experts like this around the world, is that the experiences of young carers, irrespective of where you live, are so similar, the only difference is the amount of support that exists around them. So we look at countries like the UK, where there are 300 young carer support services, and young carers are while there needs to be a lot more recognition and awareness, there is support. And then you look at organizations like Connie's in the US, where there is support but there's not that much awareness and there's support in specific areas, and same in Canada and in Toronto, Australia is very similar. Where we don't have a lot of young carer support services, little dreamers is the only organization in Australia that supports young carers, irrespective of their age and who they care for and where they live. So we cover the whole spectrum of care, whereas there might be specific sibling support programs at cancer organizations and things like that, or for mental health young carers. And so there's a massive gap in the Australian community for support. But we also young carers struggle with awareness and identification. Significantly in Australia, there is very little understanding of who a young carer is in their experiences. And something that we're also trying to bring up to the top of the conversation in Australia is those inappropriate and unsafe levels of care, and what does that look like, and having those inner like uncomfortable conversations around what happens when a young carer is doing too much, and how do we protect young carers and young people from that. And at the same time, you've got young carers who are struggling with their education. We've got severe amounts of mental health amongst our young carers. We've got very high rates of financial disadvantage. 50% of the young carers who come through our program to live below the poverty line in Australia. So you've got a lot of kind of intersect. My favorite word at the moment is intersectionality. You've got a lot of kind of multi level factors that influence young carers, and they're also young people, and we need to remember that they're going through all of the things that young people go through throughout childhood, and they've just got those other things layered on top. And so. I think that the biggest challenge facing young carers in Australia is all of those things that face young people, plus a lack of identification, lack of awareness and a massive lack of data and research in Australia then helps with the funding and helps with the recognition even more we don't have that data coming out of Australia at the moment.

Todd: 25:20

Well, that's I have to say. I'm just sitting here in awe of everybody I truly I mean, I know Connie, and I've known AAC y, and I'm on their national advisory council, and so I hear it there, but, and I see all of you posting, but to listen to everything you're sharing and have us all together is just so powerful. There's two things I want to point out before I keep going. Connie mentioned the detention example where, you know, just didn't know. It reminds me of this video that maybe everybody's seen, and I send it out all the time. It, I don't know who did it or where. It's called don't judge. And it's where this kid is, sort of a rural community is late. He's late. He's late. He keeps getting slapped on the wrist by the teacher. And then his teacher the next morning sees him, this little kid, pushing his mother or his grandmother in a wheelchair. And when He comes back to the classroom and knocks on the door again, he lets him in, and instead, the teacher puts the ruler in the child's hand, puts his hand out, and then gives him a hug. I mean, it's just it brings tears to my eyes. I just watched it the other day. The other thing, Andy mentioned the medication thing, and that's a perfect example, because that was something the thing on the Today show yesterday. That's one of the things that was brought out. I don't remember which of the two individuals, but they talked about, he's calling all the time from school to make sure that his mom's taking medication. So everything you're sharing is so powerful. And you know, we really appreciate you all here. I'm gonna go on to a very interesting topic. I'm actually gonna switch up the order we talked about before Todd.

Natalie: 27:01

That makes me happy. Yeah, you know, splice it up, whatever.

Todd: 27:06

So I found Australia's history fascinating. Number one, that it's 30,000 years. And so 30,000 years and Maddie, you mentioned this in the information you sent over, it's 30,000 years with the First Nations people, and they have care and compassion ingrained in their culture. It just blows my mind. But one thing I want to ask of everybody, and we'll start with Maddie, since it was an Australia question to start or topic, is, what would you say is the impact that the caregiving, the caregiving youth on minority groups and or in your case, indigenous people.

Unknown: 27:46

Actually it's a really good week for us to be having that conversation in Australia this week. It's a week called NAIDOC Week, which is a special week for to encourage everyone to learn about our first nations history and our First Nations people and culture. And so it's a really exciting week to be talking about this. We the Australian First Nations people have been here for 30,000 years, a long time before Australia was the country that it is today and the area that it is today. And it's a really interesting because our First Nations people have significant caregiving responsibilities, but they don't have the word for carers in their language, and so it means that there is a massive barrier to support for our Aboriginal and indigenous communities, and it's also not something that they would actively go and seek support for, because caregiving is a family responsibility and it's just part of what you do, and It's a given that that's what you do in your culture. So we need to make sure in our organization, we don't do this well, and I need to acknowledge that we don't do it well, and there are services that do and make sure that there are first nations led services for young carers. In Australia, it's really important that they're led by people within the community, for people within the community to take into account those cultural barriers and make sure that they are culturally sensitive services, and it's something that we look at for all culturally and linguistically diverse communities. Australia is an incredibly diverse nation when it comes to multiculturalism, and so making sure that there are those nuances taken into consideration when planning and delivering services, and it's something that little dreamers is actively working on at the moment, is, how do we bring in first nations leaders and empower our First Nations young carers to become leaders within our organization, to then make sure that other First Nations young carers feel included and feel like there is a place for them. And it's also around representation. When you're having those conversations about who a young carer is, making sure that young carers from all diverse communities see themselves in those conversations. So it's what photos are you using, what language are you using, what words you're using to make sure that they know that they're included in those conversations to break down. Barriers to support and access as

Todd: 30:02

well. Thanks, Matt. Yeah, it just points out there just so many levels and layers to this topic. We could talk for hours. There's no doubt days and days. I'm going to go over to Andy with this question. So Andy, similar question in terms of caregiving, youth and support for those that are of minority groups? Yeah,

Unknown: 30:23

it's something that we're really looking at in the UK at the moment, because I think what we're tending to find is that sort of young carers from sort of minority groups are often underrepresented in sort of young carer support services. And so we're trying to understand what is the what is the reason? Why are they not sort of being linked into support. And I think one of the sort of key starting points is that there are some, for example, some languages where the term carer just simply doesn't translate. And so even just trying to explain this concept of a carer, there's not a word for it in their language. And I think that then also follows into sometimes some of the cultural expectations. So in terms of various communities, where actually it's almost expected that the the eldest child in the household will help take care of the grandparents. In terms of the grandparent will come in, move into the back, into the family home, and the parent, or parents are out at work, and it's the eldest child, and that is, that's what's expected, and that's what's done from that perspective. So how you try and sort of overcome some of those sort of barriers or challenges is really, really important. And then I think just really picking up what Maddie was saying is about, how do you ensure that the support you provide is culturally appropriate and takes into account the needs, the beliefs of the different groups. So it could be in terms of something as simple as, what day of the week, in terms of you're providing your services. For some of the some of our communities actually into providing support on a Sunday gives challenges. But for others, it might be hit on a Friday evening or a Friday night from that perspective. Or it could be in terms of, if you've got a young carers residential actually, is there a prayer room in terms they can go and use? It's some of those simple things that can actually put in place, or barriers without sort of realizing. But I think it's then also in terms of a big focus that we're trying to do in the UK at the moment is, how do we reduce the number of children providing large amounts of care? So across the in terms in the UK, we've got around about 15,000 children who, sort of data shows, are caring for over 50 hours each week. I think one of the key challenges we're hearing from some communities is actually there's a real sort of reluctance, and again, it's just something that's not done in people from outside of the family, outside of the community, coming into the home, particularly to provide personal care, to provide sense, sort of, sort of sensitive, intimate carers as well. So really trying to understand, how do we make sure those young carers are able to get support? How do we break down some of those barriers to make sure that the sort of stigma or concerns around what their community will say about, oh, actually, you've got, you've got someone coming in to provide care for the parent or care for the grandparents. I think there's, there's lots of work we're still needing to be done. And I think that's particularly the case in conditions such as mental illness and drug and alcohol addiction, where there's even greater levels of stigma than what we see in sort of the broader young carer population, yeah,

Todd: 33:22

thanks for sharing all of that. Andy, I think that the phrase that I just took away at the end is there's lots of work to be done. And that's that's everywhere, that doesn't matter where. And the thing is, we could be talking a year from now, three years from now, five years from now. We're always going to say that, but we're going to be making progress during that time. So Connie, what would you say that same question about minority groups here in Florida and overall in the US?

Unknown: 33:49

Well, I think we're especially challenged with minority groups that are not citizens, and so one of the challenges with that is getting the same supports. So one great example is that we had one family whose roof was leaking, and it was repaired, but it wasn't properly repaired. So when we went in to do a home visit, there were five different buckets collecting water, and we weren't able to get a regular company to come in to help fix the roof. We had to go to a religious organization in order to get the funds to repair the roof properly so they didn't really have a voice. And I think what was already mentioned about the cultural aspects and the lack of wanting help in the home, maybe the lack of finances to provide extra help, and so the resources are really limited. We also see that you. Know the children want to protect their parent, and so when the child is providing care, say, maybe at the time when their parent is working, the parent doesn't realize what the child is really doing. And so I think even Andy in your Census a few years ago, the number of young carers was really underreported because the adults who answered the census questions didn't realize all that the children were doing. And so I think that adds to the burden of the children, because they're not they stuff the emotions that they're going through. And, you know, as a as a child, you have this sense of, you know, what's going to happen to me. And we really saw that. And I don't know if it's post covid Or perhaps it's, it's somewhat related to video games and and seeing death on on the television or in other ways. But when we we have an overnight camp, and after breakfast, we give the kids note cards and ask, what are they worried about? And the majority of them were either worried that their care receiver was going to die, or about the illness that they were experiencing, but you know what is at the root of that all? Yes, they're worried about that aspect, but then the overriding worry is, what's going to happen to me?

Natalie: 36:34

Yeah, yeah, that's a real fear. That is a real fear, absolutely.

Todd: 36:39

So we'll pass this over to Chelsea for the last answer on this related to minorities, and it certainly fits relative to Toronto, because there is such a diverse population in Toronto. So Chelsea, what would you

Unknown: 36:52

say yes, as certainly similar responses to Maddie and Andy, that there is definitely an underrepresentation in terms of those culturally sensitive and appropriate supports, in terms of, you know, offering supports in other languages, having that representation of your own culture in the supports, and finding that Toronto is one of the most diverse cities on the planet, and considering how few and far between young care supports already are in Canada, there is even more barriers finding those you know support, support in the language you speak or that understands your specific caregiving experience, because already so many caregiving experience are so unique to the individuals and as well as different cultural cultures. So it's definitely something we're working on and improving to ensure that these individuals can get that culturally sensitive support they need. And similarly, we find that caregiving just looks so different in so many different cultures as well, especially in, you know, multi generational homes, or in cultures that have more so that setup, it's just what you do, you help with your prima, or you help with your sibling, and it's not viewed as caregiving, and that the word caregiving sometimes doesn't even exist. So those are definitely similar barriers we face as well. And Connie, I really resonated with what you said. When you know you find young carers tend to push those feelings down, and it can be another barrier to getting to support, as well as some of the, you know, cultural barriers. And we find young carers want to be maybe the strong one in their family and kind of their role as they don't want to stress out their parent or guardian more than they have to, or, you know, if it's their other siblings, though, they tend to kind of hold all those feelings themselves, and they don't have that same outlet that maybe the parents or the other sibling have, and trying to keep everybody happy and together, and, you know, maybe bring levity or more support to the family. Often, they don't speak up about their needs and they go unmet.

Todd: 39:02

Yeah, thanks. It's, there's so much commonality. It's incredible. So next question I'm gonna, let's, let's start with Connie on this one. What is we all have to do lists for everything we do in life and as organizations, we have to do lists when it comes to improving support for caregiving youth, what would you say is at the top in the US,

Unknown: 39:28

I think at the top in the US is the lack of policy on behalf of the children. You have to be 18 years or older in order to access services. So essentially, even though they what the care that they provide mirrors that of an adult, family caregiver, in a sense, it's reverse age discrimination, you know, which is kind of interesting at a time when you know you're looking for equality. Money and inclusion, and this group has been excluded. So I don't know if, if some historically goes back to some labor laws and things like that, or you know what, what the reason is. But I think in another factor is that the first program in the United States to support family caregivers, called the national family caregiver support program, that was signed by President Clinton in 2000 was attached to the Older Americans Act. And because of that in the United States, that comes with the age discriminators, and so I think that, you know, that's probably the genesis of a lot of that. And then, you know, you always say, follow the gold. And so in our country, money may come from the federal government, and then it's distributed to the States through the departments of Elder Affairs. And you know, when you have many more adult family caregivers who are struggling and without the recognition of how many children there are, you know, how, how do you fairly divide those resources, those dollars?

Todd: 41:18

Absolutely, I know Natalie was sitting there smiling, because coming up, there's going to be a little bit of a lead in from that. So Maddie, how about in Australia? Tell us a little bit about what's at the top of the to do list.

Unknown: 41:32

Oh my God, there's so many things on the to do list in Australia. I think at the moment, we're working on the very first national carer strategy that we've had in over 10 years. And so we're hoping that that national carer strategy will have a lot more recognition for young carers than our last one did, and will actually see some very significant change when it comes to policy and legislation and protections. I do think we just need more support services like little dreamers. We don't want to do it on our own. We can't do it on our own. And so how do we make sure that there are there is funding and education and resources to help more support services set up for young carers, so that if you're living in a rural or a regional area, there is consistent support. We see a lot of support services come in for a year while they've got funding, and then they leave again, especially in our in our rural and regional areas. And so how do we make sure that that's consistent support provided to young carers who live out of the cities? And how do we make sure there is more identification of young carers in our school systems, there are majority of schools don't recognize young carers or don't have a young carer program. And so how do we make sure that that is a set thing embedded within our school system? And how do we make sure that young carers know that there is support out there for them? Those are kind of the things on the to do list. But there's so much. There's so much. And we have Carers Week coming up this year, and making sure that young carers actually recognized and have a voice during Carers Week, because a lot of the time it centers around adults. And so how do we bring that sparkle back to talking about children and carers as well?

Todd: 43:14

Yeah, thanks, Maddie and Andy. Same question for you. What's at the top of the to do list there? Yeah,

Unknown: 43:20

for I think for us here, the thing that's right at the top of the to do list is trying to make sure that young carers are on the radar of a new government. Because many people may well be aware we've just literally, in the recently had our elections, and so we have a new government. We have a new prime minister, which means for a lot of it, it's about opportunities to influence, but also it's about reinforcing messages that we've been putting out over the past few years with the previous government to make sure that young carers doesn't slip off the radar. So I think that's one of the key opportunities for us over over the coming weeks and months. But I think picking up on on what Maddie said, I think improving identification. I think we've had 30 years of research we've had, sort of years and decades of policy here in the UK. So schools are actually the biggest identifiers. There's still lots of young carers not identified within school in the school system here. But I think one of the things we're trying to do is to make sure, how do we make sure that health professionals, so doctors, mental health practitioners, people working in hospitals, that they're identifying young carers, those working in sort of social services. So what we call here social care, those who provided support to adults who've got care needs. Are there any children in the household? I think that's one of the areas. And I think I mentioned a moment ago that there's more awareness of young carers in schools, but there's a huge amount of work we still need to do to improve the support that's available in schools. We we've got a massive postcode lottery here, which I think the rest of the sort of guests here will probably sort of recognize in that you can go to one part of the country one school have great support services in place. Is you can go to a school down the road nothing. And I think it's that unfairness and that inequality that we're really trying to tackle as well.

Todd: 45:08

Yeah, that's a good point. I imagine that's probably prevalent everywhere. So Chelsea, what would you have to say on this to do top of

Unknown: 45:19

the like, my list is huge, but definitely there is, I will say they feel like there is a momentum in Canada growing around caregivers and young caregiver support. So with within that sort of momentum, I think the biggest thing on my to do list would, one, improve funding and growth of these community supports. So a lot of the supports that do exist don't get any government funding, and then there already are so few. So we really need those supports to grow and also have the funds available for them to be able to grow and exist outside of that, definitely education and awareness pieces. I myself was a young care and didn't really know what it was until I applied for this job. And so when a lot of my not knowing that that was a term or what to do, so I think there still needs to be a lot of education around and growth around that, as well as identifying young carers. So within the healthcare system, school system, within social workers, just so that they do get identified and refer to the supports they need, and get that any accommodations they might need in school and things like that to succeed. And lastly, definitely policies around supporting, uh, carers and that right now, again, in Canada, there's momentum to have a caregiver strategy, and we're in the works of creating one, but there are no policies that support young caregivers at the moment, and so we'd love to see some, you know, legislation and structure in place to kind of be able to build these supports and secure that funding to make sure your carriers needs are getting you

Natalie: 46:59

know, so, So funny, Todd, because several of you talked about policy, and you know what policy is, what drives funding. And so my background and what I do, actually, full time job, is policy and advocacy. I work with government entities and seek to change, make change. And so I'm gonna because I know our time's getting tight. So I'm going to say to you guys, I've got a question around policy, because we have a separate policy panel that's coming up in a couple of episodes. And so if there was one policy change, I feel like, I know Connie's because Connie caught me. I was like, what? That's here in the US? I got you girl, because I work with at risk children and youth. And so, if there was one policy that you could put into place that you think would pull the lever, what's one policy that you'd be like, I could use that policy right now, and that would, that would be impactful for us. And I'm gonna look back at Connie. I'm going to Connie first. Oh, boy,

Unknown: 47:57

so, and you're right. You know, the one policy is inclusion instead of exclusion. I

Natalie: 48:06

appreciate that Connie, that 18 that caught my attention, because that's also with the VA in our that supports military. I had spoken with the VA Connie and the caregiver support program for our military and veterans. Also the age limit is 18, and so that's something I'll be working on. The VA. We need it alongside you. I'm all about it. Girl, I got you. Let's go to Maddie. What do you what's the one policy that would be a pull a lever for you?

Unknown: 48:34

It would be the creation of a Care Act or a carers policy. We don't have one. We have a carers recognition act that nobody knows about, but actually having a Care Act which goes beyond just recognition, having that would change the game for young carers in Australia. Chelsea, yeah, I think one, it's hard to pick just one, it would be similar to one that exists in the UK, where it's the the assessments, the right to an assessment of needs, so that young carers actually we can use that policy to ensure that they do actually get recognized and notice within maybe a family when they go to get the health care they Need, and refer to that support. Do you have? Yeah,

Natalie: 49:22

Chelsea, would you say that would be, would that be assessment be completed in the school? Would it be a mental health assessment by as a part of mental health services, or maybe by pediatrician?

Unknown: 49:33

It could be within the healthcare system, so even if a parent came in and, say, had a cancer diagnosis, looking at the entire family, and recognizing that beyond just maybe the person that has that care diagnosis, that everybody in the family, family would also have access to an assessment of their needs and support to be able to make sure they get also,

Natalie: 49:54

yeah, that's the money right there. The whole the whole person, treat the whole family a.

Unknown: 50:00

Indy, what you got? I think for me, I think the one thing that would really sort of help see all of the other things sort of coming into line is work by national government to ensure that actually the rights and policies that we do have in here in the UK are actually being reflected in practice. So I think Chelsea has mentioned about the right to an assessment. Actually, this year is the 10 year anniversary of the legislation that sort of gave young carers those sort of landmark rights. But actually, in terms of the fact we've got 15,000 children caring for over 50 hours every single week, that shows, in terms of actually, that we've really got nowhere in terms of actually trying to tackle that inappropriate, excessive care. So, so yes, having better accountability in terms of where it's education, in social care and health, about making sure that those rights and policies that are in place in here in England are actually being implemented and being sort of recognized the impact for young carers on the ground. Yeah,

Natalie: 50:59

man, Todd, I'm fired up.

Todd: 51:01

Yeah, I am too. I know we're bumping up against time. No worries. Keep going. So my final question, and we've talked about so much of this, so it's almost asking you just to pull it all together in this the answer to this question as concisely as possible. Of course, what? What does the future of caregiving youth support need to look like in your country? And let's start with Maddie, yeah,

Unknown: 51:31

the future of caregiving support in Australia needs to look like equality. It needs to look like equal opportunities for all young people, irrespective of whether they have a caring role or not in their home, it needs to look like young people being able to have the opportunity to have a childhood and be a young person alongside their caring role and still have the space to figure out who they are and what the future looks like and what their identity is outside of their caring role. I think our caring role, and having grown up as a young carer myself, our caring role makes up so much of who we are, but it doesn't need to define everything about ourselves. So the future, yeah, the future of young carers and caregiving support in Australia needs to look like making sure young carers have the space and the opportunity to figure out who they are.

Todd: 52:20

I love that. Chelsea, I'm going to bump back over to you. How about in Canada? Yeah,

Unknown: 52:25

again, I'd love to see some of those policy changes come into place. More funding and better support for the creation of community programs as well for the ones that exist, equal support for all young carers, regardless of their background, and making sure they can also don't have any barriers to the supports they need that way, and yeah, just the young carers to have a chance to, similar to what Maddie said, really like develop their identity outside of the caregiving role. I know there's research that shows that young carers tend to enter helping professions, and there's a tie with that, just because it becomes so much of who you are within that and yeah, just the chance for them to also have the space to be good again and have maybe some of those responsibilities fall for Justin, yeah,

Todd: 53:15

thanks, yeah. How about Andy? What

Unknown: 53:17

do you what do you say? Yeah, I think in terms of the outcomes we're trying to achieve. It's exactly what Maddie and Chelsea just said around that quality and that actually no child ends up taking on levels of caring responsibilities either just inappropriate or sort of excessive, but also in terms of meaning they don't have those same life opportunities. So they don't get that fair future, the chance to go on to higher education, to get a job, to be able to have a good transition, and just as Chelsea said, be a young person. So So in terms of what the caregiving support looks like, I think it's a consistent approach that focuses on sort of three key areas. One is trying to prevent children being a young carer in the first place, where that's possible, where that's not possible, and there are lots of situations where it's physically not possible. It's about reducing the amount of care they're providing. And then the third one is making sure there's support in place to actually reduce the impact, so to make sure that they're able to get support or education with their mental health, have a break from caring. I think when we have that those three elements in place consistently across the whole of the UK, that's what will be the sort of much better place for young carers. I

Natalie: 54:28

want that for everybody. Andy, man,

Todd: 54:30

I want that for everybody. Love how you broke that down for sure. Yeah, absolutely. So Connie, bring us home. So

Unknown: 54:38

within the United States, several states have statewide task forces because it's not just the government, but it's also have the state response. And so inclusion of caregiving youth in those statewide task forces on family caregivers, as well as in the national strategy, which again tends to not. Have the voice of the children in it. I think also, you know, I believe in in some of your countries, you provide some finances, some financial support if there's a young carer. And so we don't provide, right now, any incentives as a reward for kids who are caregiving, except within our organization, we are able to give community service hours, since that's a requirement for high school graduation, and something that we will be expanding and then remembering that this support for the children is not just for today, but for tomorrow, and how many of them incur trauma, and if that trauma isn't resolved when they're young, that then it can raise its ugly head in the child's adult life. So the recognition and the return on investment is huge, and so I think you know that that's got to to play into the minds of people who will offer financial support. Man, powerful, yeah,

Natalie: 56:11

I feel like a better person right now. Todd, in the sense of, I'm fired up and I'm like, Ooh, I am ready. Like, I You guys are such a powerhouse group of advocates. And you, you're not only doing direct, you're doing micro and macro. I'm a social worker, and I just see all the things that you're doing. You're wearing so many hats and and just so impressive. And so I'm gonna, I want to the last, last question, which is, what is one thing that you want our listeners and viewers to take away? What's the one thing you were like, I really want, if you listen, if you got nothing else, this is really something I really want you to take away. And let's start with Chelsea. Yeah,

Unknown: 56:54

I think there's just one thing we haven't taken the time to highlight it yet. I think I've got my point across from the changes that need to happen. But I'd also just love to acknowledge, you know, we've talked a lot about the challenges these young people face, but I just want to acknowledge a lot of the strengths that come with caregiving roles as well. Like a lot of our young carers, tend to be like have natural leadership qualities within them. They tend to be more empathetic and compassionate than a lot of their peers, and great in crisis, a lot of other things too. So I just want to highlight, although there might be a lot of challenges they face in terms of that there, I may be biased, but some of the greatest young group of young people, and I feel so privileged to work with them and just making sure we include their strengths and voices in the supports and research and all these sort of developments we take in to make sure it really is being guided and led by their incredible voices.

Natalie: 57:52

That's amazing. Good point way to come back to strength space, my friend Andy, let's go to you. Yeah.

Unknown: 57:57

Firstly, thank you, Chelsea, for bringing in that positive side, actually, that's what we hear from young carers so much. I think for me, I think Chelsea earlier said that there's momentum in relation to young carers from a policy perspective. So I think to go alongside that, what I'd be really keen for listeners to sort of take away is that young carers are everyone's business, whether you call them young carers, whether you call them caregiving youth or any other title. Right now, all across the world, there will be young carers in our schools, in our GPS, our doctors surgeries, our hospitals, in our streets where we live, and they are the ones who we need to be thinking about, actually, in terms of the child supporting a mum who's struggling with depression, or helping support their autistic sibling, or supporting a dad with it, with Alzheimer's, etc. That's the thing. Once we get to that point of realizing that young carers are everyone's business and we've all got a role to play in recognizing them, that's when we can start to get that culture change, that shift in the sort of awareness as well.

Natalie: 58:59

Miss Connie,

Unknown: 59:00

I would say that there's a great opportunity to recognize caregiving youth within congregations and to be able to share more information, to embrace them and support them.

Natalie: 59:14

Thank you. Miss Connie Maddie, let's wrap her up. Those are,

Unknown: 59:19

those are some hard acts to follow. I tell ya, I think that Chelsea Andy and Connie have said it so beautifully that we do need to recognize young carers strengths, and we need to make sure that we're having conversations about the incredible and beautiful things that young carers bring to the world that we often don't realize that are skills that we're developing in our caring roles, but I also think that we need to make sure that we're asking young carers a very simple question of, how are they, I think so often we say, how are you? How's your family? And the automatic response is, yeah, mum, who I'm caring for is doing well, she's healthy, or she's in hospital. But really making sure that, if you're listening to this today, and. You know a young carer, make sure you ask them how they are doing, and try and get them to answer how they are, rather than how their family is. And I think giving the young carers the recognition and space to express how they're feeling is something that goes far beyond kind of a day impact, and it recognizes and celebrates everything young carers have to give.

Natalie: 1:00:20

You know Todd that ends us perfectly because they are hidden in plain sight, and that's the caregiving the caregiving youth series is about these youth one they have to self identify, but we have to see them and asking them how they're doing, I think is critical. You know, I'm going to tell you these amazing organizations, Todd, they do all these services at no cost, at no cost to families and But friends, you're listening and watching these folks, these services do cost money, and so every one of these amazing nonprofits, I would encourage you, to seek them out. We'll have all their contacts on our show notes. We'll have them on our websites. Todd and I are committed to making sure everybody's on our websites. Go to their individual websites, donate to them, because you are pouring into tomorrow's leaders. That's what you're pouring into. And I'm going to tell you these are some organized little leaders and so guys, thank you so much. Todd, thank you for CO hosting with me. This has been so fantastic. Maddie, Chelsea Andy Connie, love you. You guys. Are

Unknown: 1:01:29

you so much so thank you so much Absolutely. Thank you everyone,

Natalie: 1:01:33

until we confess again, we will see you next time. Thank you for being a part of caregiving youth hidden in plain sight our special series with Confessions of a reluctant caregiver and our partner, my care friends with Todd, thanks. Well, friends, that's a wrap for today's educational episode. Thank you for listening to our special series, caregiving youth hidden in plain sight. And don't forget to visit our website to sign up for our monthly newsletter, sign up for the free sisterhood advantage discount club, and, of course, connect with us on Facebook, Instagram, LinkedIn, Tiktok, Twitter and Pinterest. You'll also find the video recording of all our episodes on the confessions website and our YouTube Channel. We'll see you next time when we confess again you.