Siblings, Disability & Financial Security

Helen Reese:
Don't be afraid to get some help. So we can't change our parents, we can't change other people. Only you can change. So maybe if you need help thinking about how you're going to approach the conversation, or how you might be presenting yourself in that situation, and how you can make the best of it, it's also a great idea. I think the-.

Joeita Gupta:
I'm Joeita Gupta, and this is The Pulse. It's not uncommon for people with disabilities to outlive their parents. This means that often siblings become primary caregivers with responsibility for financial decisions and planning. It's a role that many siblings say they feel unprepared for, and yet no one seems to be talking about this. Many people are put in the position of needing to balance their life goals and supporting their families, such as planning for a child's future, while also looking after the financial well-being of an adult sibling with a disability. The fact is, we all love our disabled siblings and we want to do our best, but often people just don't know how to go about it. Today we discuss financial security for siblings with disabilities. It's time to put your finger on the pulse.
Hello and welcome to The Pulse on AMI-audio. I'm Joeita Gupta. It's really interesting and exciting to be with you today because we're talking about a story that I would never have thought about had it not been for my wonderful friend Meagan Gillmore, who pitched it to me. And she has a podcast Connecting Disabilities that I will put in the description down below so you have a chance to check that out as well. But Meagan said this would make a great story for The Pulse, why don't you talk to them? And I said, Sure, I'll check them out. And what Meagan ended up pitching to me is an incredible story about a new course that's being offered for savvy siblings to help them be better financial planners and decision-makers for their siblings with a disability. So I am really keen to get this conversation underway.
I'm joining you as I always do, from the Accessible Media Inc studios in downtown Toronto, which is on Treaty 13 Lands. Today I have my hair pulled back in a ponytail. I'm sitting against a white backdrop, and I am in a purple sweater with long sleeves and a round neck. So now that you know what I look like today, let's dive right into our conversation. My guest today is Helen Reese. And Helen is the co-founder of Siblings Canada and the co-author of Savvy Siblings: Strengthening the Financial Security of Your Sibling With a Disability. Helen, hello and welcome to the program. Thank you so much for joining us today.

Helen Reese:
Hi, Joeita. I'm very happy to be here. Thank you for inviting me. And Meagan is pretty awesome. I'm so glad she connected us.

Joeita Gupta:
Oh, I'm delighted. And it just goes to show you the small world and everything. Tell me a little bit about when you realized, or when you had that aha moment, where you said, we really need a course that talks about financial planning and security for siblings with disabilities.

Helen Reese:
So a lot of the work that comes out of Siblings Canada is based on personal experiences. So the actual origin came probably eight years ago when I became the primary carer for my brother Paul, who's a person with a developmental disability. And I had to suddenly navigate all these systems at different levels like federal, provincial, even municipal, and not really having a sense of how do all these things work together and how can I make sure that I'm going to not make any mistakes that compromise him financially over the long term? And the other piece about that is what does he know about his own financial situation? Because we're not, hopefully not doing this all for our siblings with disabilities, but doing it with them.

Joeita Gupta:
And so were you at all overwhelmed? Because it's a complete quagmire trying to figure this out. And I say this as a person with a disability, it gives me the heebie-jeebies, but as a sibling where you also feel the responsibility for your brother, Paul, did you at all feel overwhelmed or unnerved by the sheer complexity of the situation?

Helen Reese:
Oh, absolutely. You said it perfectly in saying that it's a quagmire. Even though I've been doing this now for eight years, and I think I have good advisors and good help, I'm still confused. There's still things that I don't understand. Also because people change and circumstances change over time. So my brother is not necessarily in the same place now than he was eight years ago. So when I first started caring for him, for example, he was working and now he's retired, plus his disability has changed over time. He's now also got physical disabilities as well as developmental disabilities. So things change. And so the learning curve continues. It's not like you just learn something and then it's over. And also importantly, regulations change and rules change. So yes, absolutely, I feel overwhelmed. I did feel overwhelmed and I still feel overwhelmed about the system around finances for people with disabilities in Canada.

Joeita Gupta:
Hence the course Savvy Siblings. Give us a bit of an overview about what the course entails and what someone might learn if they take the course.

Helen Reese:
Sure thing. So it is an online self-paced course. It takes about, let's say four to six hours to complete, and it includes quite a few videos, some text, there are discussion boards, some opportunities to do some reflection, and we also have a few interactive learning pieces. So we go through everything. We start with actually a look into ableism and how ableism influences our financial, the way financial systems are created for people with disabilities, but also how maybe our own ableism can be influencing how we think of our siblings and their financial context. Then we look, of course, at the federal benefits, provincial benefits, municipal benefits. We also look at relationships because networks and relationships can also influence financial security. We look at safeguarding, there's a lot of risks out there. How can we safeguard the money that we do have? And yeah, that's in a nutshell, what we're looking at. The course is open for until June 30th, 2023. It's free. I don't know if I mentioned that, but it's free and available for siblings to take.

Joeita Gupta:
You've now piqued my curiosity when you said, how ableism structures financial systems, I had this, Oh, wait a minute. What are you saying moment? So you got to expand on that for us, Helen. How does ableism influence the financial system?

Helen Reese:
Oh, man, I was afraid you might ask me that, but of course, we restrict what people with disabilities can have access to financially, even perhaps they were created in a time when people with disabilities were not necessarily working when they were institutionalized. So what about now when people are able to work and earn their own income and are penalized for doing that, that is most certainly an ableist construct. The reporting, the putting forward the belief system that people with disabilities need to have their finances monitored. All these are things that we don't do for people who are able. So I think there are a lot of constructs that are ableist that we may not have an understanding of where the origins come from, and what the belief systems that are wrapped around those constructs. And then of course, there's our own ableist beliefs that might be deep inside of us as family members and what we think that our brothers and sisters can or cannot do, and what they are deserving of or not. So there are a lot of places where ableism creeps in to the way things are done.

Joeita Gupta:
And I was also thinking the same tools, the same financial tools don't apply to everybody. We know that, but often the same financial tools that might be designed to help people with disabilities don't evenly apply to all people with disabilities. An example, someone related to me was about going to the bank and being told this was a parent and being told, why don't you open a disability on RDSP, registered disability savings plan? And it's such a good option to save for your child with a disability. And he said, I know it's a good program, but with my child's illness being what it is, I suspect they won't live that long to actually benefit from the program. And so there are so many layers of complexity. And you mentioned this earlier in the conversation as well, Helen, that there's federal rules and regulations, and then the provincial rules and regulations and municipal, everybody. And then if you're indigenous, you throw that into the mix, it gets so convoluted. What was your research process like? How does the course cater to someone living in Toronto versus catering to someone in Halifax?

Helen Reese:
Oh, amazing question. So we know that we can't deep dive into every single jurisdiction across Canada. So what we did is we took a broad overview. Originally we worked with the Center for Inclusion and Citizenship at the University of British Columbia, and they conducted a literature review to find out what are the support services and programs that are out there, what kind of frameworks exist? They did a dive into what resources exist already in Canada, what kind of online calculators or programs? And then they looked at the different gift and asset limits. So while each jurisdiction is different, there are commonalities. So we looked at what is in common among all the jurisdictions.
So we started off this project with a really broad understanding of what exists across the country. And then we did a survey in 2021, we did a survey to siblings asking them, what do you think you need to know and how do you want to learn it? So everything that's in our course has a very strong foundation in that we have this broad understanding from the University of British Columbia and the results of our own survey. And like I said, we are providing an overview and looking at commonalities, and also helping people to figure out, so in my jurisdiction, what do I need to look at? Because sometimes it's like we don't even know where to look.

Joeita Gupta:
Not just where to look, but also what to look for. Okay, is there a program that provides funding for assisted devices? Is there a program that'll pay for home care? You may not even realize that those things are out there, but if there's a list or something that you can double check and say, maybe there's something out there in my province, then you're still better off thinking about these things than if you're not. What were some of the things that siblings felt they needed to know the most? So I know just in managing my own finances that there's a lot of things to keep track of, down to the bills that need to be paid and the special programs that might exist for people with disabilities and the savings and the retirement options. But for the siblings that you surveyed, what were their big asks? What is it that they really felt they needed to know?

Helen Reese:
They really wanted to know a lot around the different levels of benefits. So you touched on RDSPs, and I think that's really interesting just to mention that siblings never ask about RDSPs. And I think that's because of one of the things that you mentioned. It's something that is for later or much, much later, and sometimes it doesn't really help the siblings in that moment. So I know it didn't come up, which I found very interesting. But other benefits, especially around housing, around employment and things like micro boards or other kinds of legal structures that help to perhaps relieve some of the siblings' worries around how am I going to take care of my, or be involved in the care of my brother or sister with a disability? And things like micro boards and networks can really help with that. And just how to keep our siblings safe from people abusing them financially.
So those were some of the big items that came up. One of the other items I should say that came up in one of the top items was how to advocate for my brothers. Now that is something that was so such an outlier in our survey that we actually chose not to put it in this course, and we're going to save it for another time. And we're going to look at, we're going create some work around advocacy and different kinds of ways that brothers, sisters can do that. But those big pieces that I just spoke of, those are what siblings were asking for.

Joeita Gupta:
I'm wondering if you've got a module in there about how to have conversations within the family. Financial conversations, I think some families are really good at having them, but I think for a lot of people, these conversations can be uncomfortable or tense, so they keep putting them off. And when you throw disability into the mix and you've got this whole other layer of complication, what is the best path forward if you want to have a discussion within your family, maybe even while your parents are still alive about caring for a sibling with a disability?

Helen Reese:
Yeah, having those kinds of conversations while your parents are still alive is an optimal situation. However hard it might be is still optimal. I wish I had done that. And I don't put that on my parents. That was actually all about me not wanting to have the discussion around what life would be like when my parents weren't around. Money and death are two very emotional and very charged topics. And so talking to family is really a delicate process. I think what we might want to do is to take the Savvy Sibs course actually, just so that you know what kind of questions you're going to ask and take bite-size pieces. So start with some smaller, some easier, less charged questions. And this is also not a one-time conversation, so you're not going to sit down and have one huge conversation around money and death. It's going to be multiple conversations probably over time. And one of the things I touched on earlier is that things change so much.
So the conversation that you might have at one time is not at all what it may end up being at a later date. Yeah, and I think the other thing is don't be afraid to get some help. So we can't change our parents, we can't change other people. Only you can change. So maybe if you need help thinking about how you're going to approach the conversation, or how you might be presenting yourself in that situation, and how you could make the best of it, it's also a great idea. I think the one other piece, Joeita, that I don't want to negate in this conversation is that including our siblings in those conversations is very important. Being mindful not to create stress and anxiety. So for example, if I were to talk to my brother right now about death, that would just be not the right conversation to include my brother in. So we don't want to contribute to any kind of anxiety, and money's such an abstract concept as is death.
So just being really mindful about how our siblings are receiving this information, but also finding out what do they want? What kind of life do they want to have? What are their dreams, what are their ambitions and how do they want their life to unfold? Because that's a very, very important piece of this.

Joeita Gupta:
It is. And I was about to ask you about it too. So you see we are very much on the same wavelength here. Now I'm going to put this next question to you very clumsily. So I apologize. I think we can agree that there isn't necessarily a right time to have a conversation. It's better to have the conversation than not to have it, but do you think there's an optimal time to have a conversation? I'm thinking if the, let's say the able-bodied sibling is a teenager or a young adult, is that a good time to maybe sit down and have those conversations just like we have some ideas about when we talk about the birds and the bees, maybe we need to have a bit of a discussion about when the right time is for families to sit down and have a discussion about helping a sibling with a disability. What's the right time?

Helen Reese:
Ooh, that's a big question. Yeah, the younger the better, because like we say, it's not a one-off conversation. However, it's really important for me to point out that as a sibling, it's not our birthright to care. So you open the conversation by saying, we all love our brothers and sisters, but I've met a lot of sibling pairs or triads that they don't necessarily have a good relationship. They don't necessarily love each other, which is another kind of complexity. But I think siblings need to have the choice to care, which is really complicated, because if siblings don't do it, who's going to do it? But that's a different, different issue. So once, if a sibling has chosen to care, to step into the caring role, the sooner the better in small pieces. And being delicate, we don't want to sit down a very young person down and say, So when you're in your fifties, you're going to be responsible for X, Y, and Z. That's just not helpful. And probably not going to encourage siblings to make the choice to want to be the carer.
But I wish I'm saying that again out of my own personal experience, because I really wish that I had, had those kinds of conversations when I was younger to understand what was going to unfold for me when I got older. And maybe my parents tried and I wouldn't listen. I'm not really sure what happened there, but I think it would've lessened the shock of... That honestly has taken me, even now, I still wonder, Wow, am I really here? Is this really what's happening to me? And especially around finances, because as we all know, if we have a sibling who is on benefits, or even who's working and there's club acts involved, people with disabilities in Canada are forced into poverty or near poverty just by the construct. We were talking earlier about the ableists systems and the ableists constructs that force people with disabilities into poverty. So who pays for that gap between what they are given through benefits and then what it takes to actually live in this world? And very often it's parents who are filling that gap. So what happens when they pass away? Who's filling that gap? Sorry.

Joeita Gupta:
Maybe your sibling. That's where the sibling comes in. Oh, I do want to ask you then, because if you've seen the safety videos on airplanes, they'll often say, put your mask on first and get the oxygen flowing before you help somebody else. To what extent does your course do something similar where they're saying to a sibling who's able-bodied, you need to get your own finances sorted out, figure out what your life goals are before you then try to help a sibling with a disability. Because I can see for someone who is an able-bodied sibling who chooses to care that, that could become something that can take up a lot of their attention to the detriment of other things that are going on in their lives.

Helen Reese:
Well, there's a couple of pieces in that amazing question. And one is your own financial house. And then the other one, and I don't want to lose it, that's why I'm mentioning it, is taking care of yourself, your oxygen mask. So, we can't assume that as the able body sibling that your own financial house is in order. For a lot of people across Canada, especially right now when housing costs are so high, inflation, people are really struggling. So this course is not really about advising on finances. It's really an overview into what's out there, but it is an important consideration what your own financial house looks like just because of what we were mentioning, that there's a gap. And also we don't want people to, yeah, it's just really complicated if you, yourself are struggling, and then you need to support somebody who is also struggling because of they're not receiving their inadequate supports.

Joeita Gupta:
One of the things you didn't mention, and I just have a few minutes, so I wanted to ask, is whether this course at all gets into the question of how inheritances should be managed, because often that's a conversation that parents might have with individual siblings that, or maybe just make decisions about it. But I know that for a lot of people with disabilities, if they come into a large inheritance, that can really take away eligibility for a number of social assistance programs, for example. So do you tackle the thorny issue of inheritances and who gets to inherit what?

Helen Reese:
Well, in our course, we don't provide financial advice. Becky and I are not qualified to do that. So we advise people to get the financial advice that they need. We do tackle inheritances in so far as we talk about Henson Trusts or the qualified disability trusts. So that is how we, or where we tackle inheritances. And we also talk a lot about gifts and asset limits, which are important considerations when our brothers and sisters with disabilities acquire assets. So we do tackle it broadly, again, broadly, because that's how our course, the approach of our course. And yeah, but we don't provide any very specific financial advice around inheritances. And also everybody's situation is so different. In our case, I'm the only sibling, but some people might have four or five other people in their family that need to be considered with different kinds of situations. So a good advisor can really help make that easy.

Joeita Gupta:
Yeah, for sure. No, I know you can't give us anything too specific, but just in about 10 seconds, where specifically do we go to access your wonderful course?

Helen Reese:
Oh, thank you. You go to our website, you can google Siblings Canada, and it'll take you to the Canadian Center for Caregiving Excellence website, and we are part of the Canadian Center for Caregiving Excellence, and you can access our course from there.

Joeita Gupta:
Amazing. Helen, thank you very much for speaking to us today.

Helen Reese:
Thank you, Joeita.

Joeita Gupta:
Helen Reese is the co-founder of Siblings Canada and one of two co-authors of Savvy Siblings: Strengthening the Financial Security of Your Sibling with a Disability. Well, folks, I'm really sad to go because this was a really cool conversation, and I could have kept talking to Helen for another half an hour, but alas time is ticking. If you have any comments, please let me know in the comment section below. Feel free to subscribe and like the content that we put out on YouTube or the podcasts. And of course, let us know if you've had conversations in your family about financial management and planning, especially if you've got a sibling with a disability. We would love to hear what you've gone through. Our technical producer for The Pulse is Marc Aflalo. Andy Frank is the manager for AMI-audio. And of course, our videographer is Matthew McGurk. Thanks a lot for listening. Enjoy the rest of your day.