Lessons from Ontario: What Canada Can Learn About Supporting Caregivers

Lessons from Ontario: What Canada Can Learn About Supporting Caregivers

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Carolina Gonzaga: Welcome to  CareSmartz360 On Air, a Home Care Podcast. My name is Carolina Gonzaga, Sales Executive at Caresmartz. Today I’m really thrilled to introduce Amy Coupal, who’s the inaugural CEO of the Ontario Caregiver Organization. And what an organization it is! Amy has been steering this remarkable charity since its launch in 2018, passionately supporting Ontario’s 4 million caregivers, and growing 

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Carolina Gonzaga: under her visionary guidance, OCO has blossomed from a promising startup into a mature organization renowned for its dynamic programs, strong partnerships and innovative strategies. Amy’s selective approach to leadership has transformed how we view healthcare and social service collaboration 

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Carolina Gonzaga: all while engaging deeply with caregivers and policymakers. So in today’s episode, Amy is going to deep dive into lessons from Ontario. What the rest of Canada can learn about supporting caregivers, so sit back, relax, and prepare for a refreshing blend of insights and heartfelt advocacy. As we explore the ever evolving landscape of caregiving care. Welcome to the Podcast, Amy Coupal.

Session Starts Here:

Carolina Gonzaga

(0:03) Okay, great. 

(0:04) Thank you so much for joining us, Amy.

(0:06) I’m so excited to, you know, introduce the Ontario Caregiver Organization and you and all of the amazing work that you’re doing. 

(0:14) I’d love to start just by having you share with us exactly what all of what the Ontario Caregiver Organization is purposed for and kind of what you’re fighting for there at the organization. 

(0:28) Sure.

Amy Coupal

(0:30) Well, thanks so much for having me. 

(0:31) Really pleased to be here with you today and to have another way to get the word out there around the Ontario Caregiver Organization and what we do.

(0:39) We support Ontario’s 4 million caregivers who are family members, friends and neighbours for someone in their life working through physical and or mental health needs.

(0:50) So that can mean people need different kinds of supports from us. 

(0:54) Some people might just go to the website and get information, tip sheets or resources. 

(0:59) We also have an education series that includes things like webinars, videos, e-learning.

(1:06) But we also have a lot of direct to caregiver supports, peer support through peer mentorship, peer support groups, coaching, counselling and different types of programs that run throughout the year like our caregiver learning and empowerment program called Scale, which includes education component, a group component and a one-to-one component. 

(1:29) So there’s lots of different ways that people can access our supports. 

(1:33) They’re all free for Ontario caregivers and we do that work to support caregivers where they are at with what they need at the time.

(1:43) And then we also work with our system partners to improve the experience for caregivers across health and social care. 

(1:50) So that means working 

(1:51) with organizations, working with caregivers, government, lots of different kinds of policy 

(1:57) makers and policy influencers to really help shine a light on caregivers, why they’re so important

 (2:03) in our society and in our systems and how we can improve the experience for caregivers, which

(2:09) actually ends up improving the experience for patients, clients, residents, wherever people may

 (2:14) be receiving care.

Carolina Gonzaga

(2:16) That’s incredible as somebody that is a family caregiver and having been a caregiver in the past, it seems like something that’s so needed. 

(2:24) The organization started in 2018 as I understand it and I guess my question and comment is twofold.

(2:32) I would imagine that there’s funding for this because it also optimizes the experience in our sector too.

(2:39) I mean the experience in the hospital, the ability to move people through and out the door to somewhere better is improved through the support of the caregivers who have it all up here

(2:51) So can you tell me a little bit about what that kind of decision was for the start of it? 

(2:56) Was there kind of a catalyst that led to this?

(2:58) Is it something that was being fought for for a long time or how did this all come to be?

Amy Coupal

(3:04) So just a couple of quick history points. 

(3:08) When people were starting to ask questions about caregivers in Ontario, they were looking at how people were responding to the needs of caregivers in other provinces and at that time there were caregiver organizations in BC, Alberta, Quebec and Nova Scotia and so there was this question of do we need a caregiver organization in Ontario or what is it that caregivers need?

(3:32) And so they actually commissioned a report from Janet Bede 

(3:35) and she has said openly that when she started she thought the answer to the question of do we need a 

(3:42) caregiver organization was no and she did a lot of consultations with individual caregivers with 

(3:49) organizations across the province and it was through that dialogue that she learned that the answer 

(3:54) needed to be yes and so that became a recommendation that came out of her report. 

(4:00) And the key reason that it needed to be yes and you would know this perhaps as your own experience as a family caregiver, I certainly know this, is even though people need the supports for specific physical or mental health issues that someone is working through, many people are working through a number of different things, right? 

(4:21) I go to different kinds of specialists with my dad for example and so I am a caregiver and I don’t slice and dice all my different caregiving according to this health care need, this living need that he has or whatever the case may be.

(4:38) So the role of an organization like ours is to support and champion the needs of caregivers as whole people who are also supporting whole people and so that’s really why the organization was created because it was clearly identified that caregivers needed a resource and a support just for them to help them through the journey and experience of being a caregiver.

Carolina Gonzaga

(5:05) Yeah, absolutely. 

(5:06) As somebody that has such a strong background in health care myself, my mother who I don’t have to caregiver for her all the time but when stuff goes down, I got to jump in. 

(5:19) I’m doing that one hour drive there, an emergency.

(5:22) I have to say that I often feel lost as a caregiver even though I have all the experience. 

(5:28) So I can only understand that somebody that’s been a lifelong accountant in the financial sector fields when all of a sudden they have to jump in. 

(5:36) So I’m very excited to learn about this and I’m excited that we get the chance to kind of broadcast to the world.

(5:42) You mentioned earlier that you guys support 4 million family neighbor friend caregivers.

(5:49) What’s happening with that number as we see the silver tsunami coming in?

Amy Coupal

(5:53) Great question. 

(5:54) So we did a report earlier this year called Preparing to Care and in that we were trying to get a sense of who was anticipating that they would take on the caregiving role just in the next five years. 

(6:09) And so this is people who are largely looking at the older adults in their lives and they may be an older adult themselves and saying, do you expect to take on a caregiving responsibility within the next five years?

(6:22) What we found out of that report was that that 4 million number of caregivers that we have today is going to jump to 6.5 million by 2030. 

(6:32) So each year as we move to 26, 27 and beyond we are going to see a significantly higher number of caregivers in the province. 

(6:42) And this really matters because most caregivers work and they’re balancing work and care.

(6:49) We know that most caregivers spend more than $600 a month in caregiving costs and that might be cost of living, medical supplies, different types of things, but that average cost of caregiving is over $600 a month. 

(7:04) And we also know that these prospective caregivers know they need to make a plan but maybe haven’t started making a plan yet. 

(7:12) More than half of them haven’t started making plans including those sometimes uncomfortable conversations with the person or people that they expect to care for.

(7:20) So we know the numbers are growing and we know that it’s really important to have a plan for how you’re going to be a caregiver in your life if you think that that’s coming up.

Carolina Gonzaga

(7:33) Yeah, absolutely. 

(7:35) This is something that just popped into my head. 

(7:37) When I think about caregivers and the job of, you know, being that primary person in the circle of care, I can’t help but think about family dynamics.

(7:47) Have there been any tools created to manage these, the most delicate of delicate relationships today in the organization?

Amy Coupal

(7:57) I would say two things. 

(7:59) We’ve tried to make sure that it is very clear to caregivers and to provide supports around this that caregiving comes with a range of experiences, emotions, dynamics, all of those things. 

(8:15) And so part of what I hope people will experience with the kinds of supports that we have is it’s all okay, right?

(8:24) The range of feelings, the family dynamics you have to navigate. 

(8:28) And so we’ve done webinars on how do you navigate family dynamics?

(8:32) How do you navigate those difficult conversations?

(8:34) How do you work through those things?

(8:36) How do you navigate your own emotions, right? 

(8:39) So we’ve definitely got supports for that.

(8:42) And then as we start to help more caregivers become caregivers, we also want to talk with them about how do you have a plan and how do you have a plan that works for you within those family dynamics, within the circle of care, but also with backup plans

(9:00) Because we know that there are lots of mutual caregivers at any age or stage of life, but older adults in particular may be caring for each other through different health situations. 

(9:12) And so do you have a plan for that if the expected caregiver can’t be the caregiver?

(9:18) So all of these things, not just family dynamics like you asked about, but also your own healthcare needs, your own personal requirements in terms of work or whatever it may be, all of these things are factors in what makes each caregiving experience totally unique.

Carolina Gonzaga

(9:36) Yeah, I’m thinking about those range of emotions and they are wide. 

(9:40) And so it’s nice to hear that they’re all okay. 

(9:42) So I’m hearing just an incredible amount of empathy in you, Amy, and I can only imagine the journey that brought you to your position as CEO there at OCO.

(9:51) Are you able to share a little bit about your background and what brought you to the table here today at the organization?

Amy Coupal

(9:59) I’m happy to.

(10:01) So I’ve really truly been a lifelong caregiver, and I will say that even though my caregiving journey started very young for my brother, who had quadriplegic cerebral palsy, I didn’t know I was a caregiver.

(10:15) And that’s very common that many people will say, I’m a sister, I’m a daughter, I’m a husband, I’m a neighbor, whatever it is.

(10:24) And that’s why they take on these caregiving commitments and responsibilities that they do in their lives.

(10:31) So I hear still, I would say every week people will say to me, even in a meeting, oh, I just realized I’m a caregiver, right? 

(10:40) So for me, I was a young caregiver for my brother, and he passed away when he was 22 and I was 20.

(10:49) And so really, the first 20 years of my life were really focused around caregiving. 

(10:55) And that included, you know, taking my turn at the hospital when my brother was at the hospital, and he wasn’t able to speak for himself and somebody from the family needed to go, doing lots of different things at home. 

(11:06) So definitely a part of that circle of care.

(11:09) And then my next caregiving journey really came on when my mom was diagnosed with cancer.

(11:15) And so I was in that circle of care with my dad and my sister for my mom through her cancer and palliative care journey

(11:22) And now my dad is in his late 80s, and I am his primary caregiver in the same city.

(11:28) And then I also work in a circle of care with my sister, who lives across the country. 

(11:33) And we have a great division of responsibilities in terms of how I handle things that can be done in person and how she handles things that can be done at a distance. 

(11:44) So caregiving has been a part of my life.

(11:47) And even though I’ve had these three caregiving experiences with three different family members, they’ve each been completely different based on the needs of that person, based on who I have been at the time and where I was at my age and stage of life. 

(12:02) So I have this window into how unique each caregiving experience can be and also how even the caregiving experience with the same person changes over time and sometimes overnight.

Carolina Gonzaga

(12:16) Yeah. 

(12:17) And just from the story from your brother, what was your brother’s name? 

(12:21) John.

(12:22) So the story about, is it John or Sean? 

(12:26) John. 

(12:27) I can’t help but think that he was older than you. 

(12:31) And so all of your core memories would have been this realization that you’re a caregiver, even though it took you maybe even after the fact to realize that you were a caregiver. 

(12:41) So even my mind in this podcast has opened up to the definitions of caregivers and all of the dynamics that shape the experience and ourselves really.

(12:51) So definitely a mission that is close to your heart. 

(12:55) What are some of the lessons that you’ve learned from starting this in 2018 to being this mature organization making a difference today? 

(13:04) What are some of the major lessons?

Amy Coupal

(13:07) Yeah, that’s a great question and a great opportunity for me to reflect on that a little bit. 

(13:12) One of the great pieces of advice that I was given in the very early days of the organization was go through the open doors. 

(13:20) And I would say that that remains true.

(13:24) There are, as you would well know, lots of organizations and lots of people working in this space. 

(13:30) And there are people who will say, oh, we have a common interest. 

(13:34) We have a common need.

(13:35) We want to work together to support caregivers. 

(13:37) And the door’s open. 

(13:38) Let’s find ways to work together to create these improvements.

(13:41) And then for any number of different reasons, there may be organizations that are less interested in that. 

(13:46) So we have followed the rule as a team to go through the open doors, which basically means work with people who want to work with you on creating solutions within for caregivers. 

(13:57) And that has served us very well.

(13:59) And we have, I think, been able to earn credibility by working with those folks, creating value and good solutions. 

(14:07) And then that opens more doors. 

(14:09) So that’s one lesson learned for sure.

(14:12) Another one is we have always felt very strongly about nothing about us without us.

(14:20) So caregivers have been involved at every stage of the organization, including informing whether or not we even needed to have an organization like this. 

(14:29) But we have standing groups within the organization, like our caregiver advisory group and a number of working groups.

(14:36) But we will also generate focus groups or working groups for different types of projects or bring caregivers into different conversations. 

(14:45) And it’s really important that caregivers are involved in planning and development, not only of our work, but any of the work in the sector that is going to impact caregivers. 

(14:58) I think that’s an incredibly important lesson for us, but for all organizations too.

Carolina Gonzaga

(15:03) Yeah. 

(15:04) And with this organization kind of growing within Ontario since 2018, can you tell me a little bit about, as far as you know, the footprint of like-minded organizations in Canada, but also is this something that’s becoming commonplace globally?

Amy Coupal

(15:23) Yeah, another great question. 

(15:24) So in Canada, we now have more provincial organizations than we did when Ontario was asking this question. 

(15:33) So BC, Alberta, Quebec, and Nova Scotia preceded us.

(15:37) And then we were the new kid on the block, so to speak, for a while. 

(15:40) And then just recently, New Brunswick also started a caregiver organization. 

(15:45) So that’s what we have across the country in terms of provincial organizations.

(15:50) We also have a national organization that was also formed just in the last few years and has been doing amazing work, not only with organizations like ours, but many different organizations that work with and support caregivers. 

(16:06) And that’s the Canadian Centre for Caregiving Excellence. 

(16:09) So they’re moving forward a lot of that national dialogue.

(16:13) And then we also, as you were asking, look to and learn from folks around the world. 

(16:20) And so we’ve had the opportunity, thanks to the Canadian Centre for Caregiving Excellence, to hear from some of those folks through National Caregiving Summit and to see some of those examples. 

(16:31) But we also do our own work to connect with those folks virtually and to learn more about what they’re doing.

(16:38) And certainly, for years, the leader is the UK. 

(16:42) The UK has constantly focused on identifying caregivers, having the supports for them, integrating them within health and social care. 

(16:54) And so we continue to look at the models and the practices that they use and see how we can emulate some of those best practices here in Ontario.

(17:04) Okay.

Carolina Gonzaga

(17:05) Good to know, UK. 

(17:06) Great job. 

(17:08) It’s great to hear that.

(17:10) So with your organization, in our talk earlier, you mentioned that there’s kind of a functionality to support the caregiver experience also when there’s going to be a greater organization involved. 

(17:21) So something like moving into a long-term care facility or a retirement community, maybe even bringing in a home care agency into the home. 

(17:31) And I can’t help but think about hospitals.

(17:35) So can you speak a little bit on that? 

(17:37) And I mean, any approach would be useful, either a use case or the ways that you work with these guys or the way or the goal of how you seek to improve that experience for Ontario caregivers.

Amy Coupal

(17:49) So this really ties back to our essential care partner work. 

(17:55) And through our essential care partner support hub, we work with hospitals, long-term care homes, home care, primary care, community care to work on improving both policy and practice across three different areas. 

(18:12) So the first is caregiver identification.

(18:15) So is the caregiver identified? 

(18:17) Do they know they’re a caregiver? 

(18:18) And that obviously looks different in, let’s say, a hospital context than a home care context.

(18:25) So the leading practices do vary based on the context, but there’s this pillar of caregiver identification as the first area of focus. 

(18:35) Then we also want to look with organizations in those various subsectors on how caregivers are included as a part of the care team. 

(18:47) So are they informed?

(18:48) Are they in part of decision-making? 

(18:50) Are they a part of transition planning? 

(18:53) Transition planning is a huge thing for caregivers, whether that’s hospital to home, whether it’s home to long-term care, whatever that looks like.

(19:02) It is so vitally important that caregivers are included in transition planning, but in all aspects of care. 

(19:10) So how are we including caregivers as a part of the care team? 

(19:13) And then next is connecting caregivers with the support that they need.

(19:17) And that includes an organization like ours that has those direct-to caregiver supports, but not just us. 

(19:24) Local hospitals may have their own supports. 

(19:27) There are lots of really important organizations that caregivers need to be connected with.

(19:32) So for example, if they’re supporting someone who has an Alzheimer’s diagnosis, have they connected with the Alzheimer’s Society? 

(19:39) Are there local respite programs that are available for them? 

(19:42) You know, whatever the case may be.

(19:44) So connecting the caregivers with the support that they need really in order to sustain them in that caregiving role. 

(19:51) Burnout is a real thing, and so helping to prevent burnout by connecting caregivers with support makes a big difference. 

(19:57) So we do lots of different types of work with system partners, but I think that essential care partner work is an example of how we’re working with folks across the healthcare system to really shine the light on the needs of caregivers, but also the value.

(20:14) Because what we know from the research is that these practices make a difference, not just for caregivers, but also the people they care for and healthcare providers.

Carolina Gonzaga

(20:25) Yeah, absolutely. 

(20:26) So the value is so much there. 

(20:29) I’m so excited that we had a chance to connect today, and kudos for all of the great work that you do.

(20:36) I know you started in 2018 and you shared with me that now you have a team of almost 30 people that are supporting this mission. 

(20:45) What would be kind of a last thought to any caregiver that was watching this podcast, whether it be a certain resource that you’ve got or just even words of wisdom or support as they go back into their world of caregiving?

Amy Coupal

(21:01) Remember one thing that I want all caregivers to know is that you’re not alone. 

(21:06) Caregiving really can be an incredibly lonely experience, and it’s very easy to feel like we’re the only one and we’re kind of on this caregiving island by ourselves. 

(21:16) But there are four million caregivers in the province now and many more coming, and so that’s why we exist.

(21:24) And whether you need really practical supports or whether you need peer support or you want to call the 24-7 helpline, there are ways to get the support that you need and you aren’t alone. 

(21:36) And I think that that’s a really important thing for people, whether you’re up at two in the morning or whether you’re just trying to figure this out for the first time. 

(21:45) Connect with that support, connect with us, connect with your community, connect with that circle of care in your family or whatever that may look like for you, and know that you do not have to take this journey by yourself.

Carolina Gonzaga

(22:00) Well, thank you so much, Amy. 

(22:01) I’m so happy that you were able to join and I look forward to hopefully collaborating with the organization in the future.

Amy Coupal

(22:07) Great, thanks so much for having me. 

(22:08) Appreciate it.

Conclusion

Carolina Gonzaga: A huge thank you to Amy Coupal for sharing your expertise and to the lovely audience for tuning in to this episode until next time. Carolina Gonzaga Gonzaga, signing off.

Catch the new episode with Amy Coupal, CEO of the Ontario Caregiver Organization, who talks about what Canada can learn from Ontario about supporting caregivers and all of the fabulous resources available for caregivers all around the province.