What Happens When We’re No Longer Here? Financial Planning for Differently Wired Families

Debbie:
Hey Mary, welcome to the podcast.

Mary McDirmid:
Thank you so much for having me.

Debbie:
Thank you for joining me to have yet another like fresh conversation. I get very excited when after this many episodes, I bring a new topic to the show. But I heard about your new book, which is called Care, Protect, Grow, Empower Your Family Through Special Needs Financial Planning. And I was like, you know, this comes up in my community a lot. And especially as you know, longtime listeners of the show have kids who are getting older. And you know, there’s a lot of considerations for a lot of families. who are listening to this. And so I’m very excited to explore your book and your work. would you take a few minutes and kind of talk about, you know, I read your formal bio and I know you co-wrote this with the two other women, but I’d love to hear a little bit about you specifically and how you came to be doing this work.

Mary McDirmid:
Yeah, yeah, I would love to. So about 10 years ago exactly, I came into the financial planning world. I always wanted to own my own business or run my own business or have some control over my income and life and hours. I just can’t make cupcakes, right? I’m not a crafty person. not a, I can’t produce something, right? And so I could always read people well. So I’m a really good communicator, I’m like the first translator. I think I can take really complex situations and try and say it back to people in Korean in bite-sized pieces, and that’s my big goal to do with families. But when I started this job, I had a two-year-old and pregnant with my second, Ruth, who has a rare disease. So I really was like four months in. I was a baby advisor. Had Ruth come back and realize this planning is so different. It’s such a longer, different puzzle to solve for families. And I was like, what a cool thing that I get to have this background of finance and accounting all the way from college to bumping through a bunch of jobs like a true ex-millennial to finally finding my like, my gosh, this is what I’m supposed to be doing to match my finance accounting background with my emotional. IQ of being able to sit with people in hard things and give them something that is actionable and hopefully in CRAN. It’s not always perfect. There are technical things. is a technical type of thing, but I am really trying to simplify it down in the most English way possible, I would say. And so we just started, we worked secretively about our story with Ruth. And so I knew when I was pregnant, which is a gift in the rare disease world, that we were gonna be in the NICU, that she was 99 % chance to have this rare disease. So we knew our path and we weren’t secret about it. We were very public and they also knew my job. So I had this dynamic of people coming towards me asking for help. And then I was like, you know what? I only wanna help these people. These are my people. I really wanna help, probably like you. You only want to help the people that you are like, where is this resource and why does it not exist yet?

Debbie:
Yeah. And first of all, like, I love that you’re like, I could either make cupcakes or I could go down, go down this path. But, but I am so grateful for people like you who, you know, I read through your book and before we hit record, said, you know, the anytime finances come up for me, it’s like, and I’m sure you hear this all the time. It is like a massive block for me. Like my husband knows to prepare me anytime he needs to even bring up taxes or anything having to do with budgets or finance, because I instantly go into fight or flight mode. And it’s like this language in my brain’s like not interested. Like it’s really hard for me to process. And so the fact that that’s a gift of yours to interpret and translate this content for parents who so desperately need it. I just want to say thank you. And I’m so glad that you are sharing this gift with so many families.

Mary McDirmid:
Yeah, and I think it’s kind of a requirement of our brains are probably on the very opposite spectrums of this world. I wrote several books. I saw yours and I helped facilitate writing this book with my two partners, but took the three of us, right? Because I am dyslexic. And so like writing for me, like sitting down on an empty page that gives me anxiety. Right. But having. text down and I can be a master editor, I’m into that. And so that’s my participation, right, in this book. And I’m like, I’m into the math. But there is the thing I think about planning and I hope If there is one thing where you’re like, what do I do when I go get ready to meet with someone that’s a professional? Know your relationship with money. And I think that is a math emotion habit. And different percentages along that triangle are exactly where anybody could lie. Right? So I think the math is probably the easiest part for me. It’s probably not for you, but the emotion is harder for most to be like, yeah, once when I was a kid, we had to take something off the grocery line because we couldn’t afford it. And I don’t ever think I have enough money. That’s important information for a professional to know about your relationship with money.

Debbie:
Yeah, because it shapes everything, every choice you make, how you feel about everything. So yeah, it’s super loaded. I imagine in your work, it must be fascinating and how you support families. So let’s take a step back and talk about kind of the need that this resource and your work fills because I imagine for a lot of families, especially if they are on the journey of raising a child that has more significant needs and medical challenges, there’s so many other things going on that they’re thinking about. talk about the help that they may not even realize that they need.

Mary McDirmid:
Yeah, because you’re in the, like I always tell people if you have a newborn or even birth to three, you’re like in that very, really stressful time of maybe a new diagnosis and a newborn, like let’s enjoy our baby. Let’s do that at that stage, right? And we’ll get into school and then we’re kind of rocking and rolling, even though IEPs are difficult at 504s and we all know that stuff’s its own probably podcasts you’ve done about that. I think we have to get out of emergent mode. So whatever is going to give you the relief to give your brain a little bit time to actually kind of even go down the road of thinking of the future, we have to get you there to be able to even go down the road because most want to bury that thought. We have a very hard time thinking outside of the emergent today. I was, I’m there in and out, let’s say. But I think if I can get a little relief, a little rest, an actual nap on my futon and a walk on my own, like you’ve got to get your brain to a spot where you could actually absorb that there is going to be a different path. It’s going to be a longer support. And a lot of people start thinking about that very seriously at 14 when the school starts to talk about transition planning where your kids can be in school. past 18, past the regular graduation time, because in your head you’re like, wait, what’s gonna happen when school’s over? And then you start to, the dominoes start to fall off like, yeah, you’re gonna be in my home longer. When can I retire and make sure I’m supporting three people? What does the bucket look like at the end? That is the succession of most thinking, I would think, around the planning. You gotta have a little space then, a trigger or something’s going to happen in your life where you’re like, this is different for us. And you’ll have an urgency to do something about it.

Debbie:
And so you mentioned 14 is the age when a lot of parents started thinking about this, but, you know, and then you said birth to three, you’re kind of immersed in something else. But so is there like an ideal window when you encourage families?

Mary McDirmid:
I wish there was a perfect window. I wish I actually could be engaged in some counseling to get us out of a PTSD out of a stress out of whatever we need to process to actually try and think about it would be my wonderful ideal goal. And if I could do that around age 10 to get not quite at the 14 transition is that has its own Bollywag of things to think about at the transition at 18 is like really honestly want you to have a little bit of space to think. Because if you just add something on the list, I’m just another annoying task or meeting or thing on your calendar that you kind of might not want to do. And that’s OK. But I want you to have a little bit of energy to focus on it so we can do the things that are really needed for your family. So I don’t have a perfect answer. I wish I did. I think it’s when you have enough space or one of you, of the, if you’re married, one of the spouses has enough space to kind of tackle. That is the time when engaged. And sometimes it’s an external force. Sometimes, too, it’s like grandparents passing away and you’re an administrative or an estate, right? Or another friend is going through a transition at 18. Like the Facebook groups are pretty active. So there’s a lot of questions around 18 transition. And then it trickles down, right? Totally. Totally. The mom groups are active once.

Debbie:
Right, you start being like, crap, I need to figure this stuff out too. And then yeah. Yeah.

Mary McDirmid:
One is like, yeah, this is what we did. And you’re like, wait, I have to do that. And then you’re like, how do I find the place? Who are the people? All the things, right?

Debbie:
Yeah. Right. Okay, so you talked about thinking about the future and we’re kind of talking around things. We’re talking about planning for the future and what this looks like after 18 or beyond. so people are probably listening to this and thinking, are we talking about money? Are we talking about a plan for housing? Like what are we talking about? So let’s kind of give the big landscape of what are some of the key areas that families should be kind of or would want to be starting to consider that as something they’ll need to pay attention to down the road.

Mary McDirmid:
Yeah, yeah, yeah. So I always like to start the basics of thinking, like, continuation of finance and continuation of care is usually, like, people are like, who’s going to take my spot when I’m not around? And how are we going to pay for things? Like, it’s always a future need often. And what I like to do is, like, let’s take it in some. different transitions, because there’s different topics at different places. And so that isn’t, I’m not saying that that’s not important, but that’s like, I gave this analogy today, that’s like saying, and all the cupcake analogies, it’s like putting cupcake tins in the cupcake thing and put it in the oven with no batter. we gotta make the batter, we gotta do some things today, we gotta do this, and I will dabble down the further one, but I like, I always want to bring people down to the, OK, your today need is this. And so like I talked about earlier, that first real bigger transition that is transition planners, there’s transition planning, there’s all of this talk about at 18, which is very important. Like in the eyes of the world, I don’t think we think as parents, like my child will be an adult. They are going to be an adult in the eyes of all of the other systems. OK, so. At 18, we will be, if we’re not working in the world, we’ll be Social Security eligible, right? There has to be a guardianship decision. Are we on a Medicaid waiver through your state? So we have health insurance past 26 when maybe our insurance will kick them off if we are employed, right? So that 18 transition is the biggest. We do think of that one as like, everybody knows about it and we do tackle those things in very succinct steps. The next thing people often think about is, and they hear this from the groups and all the things, is like, I need a special needs trust Like, I must need one because everyone’s telling me I need this, right? And I’m like, yeah, I mean, you might, but the special needs trusts are very benefit based and I know your audience is very wide range. So if we are on some form of benefit, so I’m talking… state benefits through Medicaid or Social Security through the federal side, we do need to protect those. And if we’re protecting those, our kids can’t have assets in their name directly, which is where an ABLE and a special needs trust come in. So let me say this in crayon. We want to give our kids a great life. And if they are on benefits, we want to keep them benefit-eligible. If that is true, they can’t have over $2,000 directly in their name. And two buckets at our availability where we can put funds are an ABLE account and a special needs trust. So whenever I present in groups or at conferences, that is the baseline I start with just because like this is the overarching big goal we’re trying to reach. Now there’s a lot of steps. There’s a lot of things in-between. And so it depends on the timeline where you are, of where we’re coming in to assist, right? And we have it all the way from the beginning of like, I haven’t applied for benefits to, I have a special needs trust, but now what do I do? Now what do I do? And you’re like, well, what are we gonna fund it with? How much do you need in retirement to fund like three lives? right, I think you can get the complexity of when. people enter and then what is, but that overarching goal, if you can think of that, is what we’re really trying to accomplish with our planning and the simplest form, that’s the goal we’re trying to reach for our families.

Debbie:
That is super helpful. And having read your book and now hearing the crayon version, like that also, and also I feel like your, your book is so thorough and it does, it really feels like it’s everything you need to know and you’re interpreting it for people. And for my brain, hearing you say it really helped. So thank you. And I also just wanna kind of clarify or just say like we have a global audience, the majority of our listeners are in the US but so this conversation will be US centric but my hunch is that there are takeaways from your book and from what we’re going to be discussing that will be applicable no matter where you’re listening. Is that what you found?

Mary McDirmid:
Yeah, I mean, the differences are the different health systems, right? So if you have universal health care, that Medicaid part probably isn’t as relevant, right? So like universal health care kind of solves some things, but there still is a funding of life problem if you don’t have universal health care.

Debbie:
Yeah, OK, that’s helpful. Thank you. So you talk in your book about care plans. That’s something that, when you say it, it’s like, yeah, a care plan. Actually, what is a care plan? And who gets it? And what do you do with it? So would you kind of talk with us about that, please?

Mary McDirmid:
Yeah, yeah, totally. So I like to think of it as anything. I mean, you can put financial and legal, can can boil it in there. I like to keep them separate because it would be everything else. Right. So the day to day care of what you as parents or if you have a care provider or a respite provider are doing for your loved one with a disability. Right. And that’s what feels daunting. It feels daunting even saying it out loud. Right. You’re like, yes. So the start of this for me, if you’re like me, I need an easy step into this. Me and my husband did this about a year ago. It was a little painful, so you’re going to find out stuff about me that everybody’s going to know. But we write down on a piece of paper everything we’re doing for our loved one with a disability, real paper, at the dinner table. And then we cross-reference each other. And then that to me is the start of a care plan because you find the holes of what the other person is doing that you don’t know that they’re doing. Right. So for me, I am not the school spouse. So my husband knows the bus schedule when school gets out, when it doesn’t get out. He is the primary, even though they call me first on the school list. And I didn’t know that. And that doesn’t feel amazing because if they can’t get a hold of him, I don’t know. what time I should be getting my kids off the bus and or when the school starts or not. So we started a Google Doc with school only information, the bus, the teachers. My kids are in two different schools. I started two different times. Like just a document I could always track if the school calls me, I’m like, okay, I pull up that document and find out who am I talking to, which school, who, which child, really in general. So that was, it’s hard. It is a hard thing to like, know that you don’t know everything, but I think all of our families are dividing and conquering, so there’s stuff you don’t know the other person’s doing. It’s always gonna be there. On the flip side, my husband didn’t know how to get into MyChart, didn’t know how to find a record, didn’t know how to set an appointment, didn’t know any of that, and I’m like, well, you need your own login. This is not something that I should only be in control of, right? And so at the very base of it, I say start that conversation, find out where the holes are, and then there’s different tools out there. We started just a Gmail for Ruth and we hold a lot of documents and the drive under her Gmail. It’s very simple, like not super technical, but like she could always share that out in the future of all the stuff we’ve saved. So we have a school folder, a medical folder, a care plan folder so that it’s all under hers. And then we are in control of it right now because she’s nine, but she can take control of it in the future and could share out things with people in whatever way she wanted to. So that is like the DIY kind of starter to that. But a care plan should be anything that’s not documented anywhere, right? Like my daughter, she is a very picky eater. She eats six foods now. We just added a bagel and cream cheese and it is a big deal in our house and it’s amazing. But if you don’t know those six foods and something happens to us or we want a respite provider to come in and give us a break, you are going to have a very hard day. She’s very stubborn. She will not eat for days, right? So like, there’s things about our kids, there’s routines, there’s executive functioning things that needs to be written somewhere in a simple form that’s not in an IEP, right? That’s not in a contract, that’s not in something that’s not absorbable. And so that is the, to me, the Again, the crayon version of a care plan.

Debbie:
I mean, what I found so interesting when I was reading, you know, the section in your book about this is that a care plan isn’t just for individuals who have significant support needs. You know, you talk about, you know, I think about my kiddo, my husband and I divide and conquer, we do a ton of executive functioning scaffolding support from afar. I still handle the medical stuff and the meds and all of that stuff. And my husband handles like the you know, like the things you need to do, to be able to class on time or to do all of that stuff and like thinking about. creating, those are things that we do to help our child have, you know, build their own life skills and kind of develop into what an autonomous life is going to look like for our kid. And we don’t know what that’s gonna look like down the road, right? They’re 21. But thinking about, again, if something were to happen to us, those are things that only we know that we do for our kid. And those are scaffolds and supports that will likely be needed in the future for many years to come. So it really shifted my thinking in terms of what we’re creating if we put together this care plan.

Mary McDirmid:
Yeah, and think it is a good catch for yourself too, to be like, when I update it every year, I’m like, why am I putting her shoes on? This is something she needs to do. This is a goal that we want her to be able to put her own shoes on and tie her shoes by the end of the year. And I’m like, but I have to get out of the house by 7.30 and I’m like, we still have to live a life. And so I think it is also like a little bit of a, hey, what are you doing? Our goal is for them to be autonomous and you’re doing all the things then that is not that you’re not going to ignore your goal is it’s the little way to check in. If you do it annually and like the heavy lift is the first time, right? But then once you have a document, you’re just, you’re just editing and you’re revving it up and you’re changing things. And you can have a history of the last 10 years of care plans where you’re like, we have, you can also see some progress. You’re like, let’s look at the one from like when she was two, you were like, okay, that was rough. That was a rough time. Right. And then you’re like, yeah, but now we’re here. Like she can get fully dressed. She has opinions about what she wants to wear. I’m like, this is awesome, because I’m like you, like, I used to say I need to get my kids ready for the world and for my 11 year old, that is true. I need to get her ready for what the world is like. And I flipped it a little for Ruth where I was like, I kind of need to get the world a little ready for her. Like, you all need to start to get ready. Like there’s some changes that need to happen. She’s going to go through some employers and all the things and it’s amazing. like, I need to like. flip it a little for her where I’m like, I need to get you guys prepared and I need to actually have a little bit of accountability on myself for what I’m doing for her. Cause I do want all the things for her and I do step in when maybe I should not.

Debbie:
It’s so hard. mean, that line, we talk a lot about it tilt is that scaffolding line, like what is the just right challenge? And then? Yeah, I mean, we could have a whole other conversation about that and understanding our kids’ capacity at any given moment and all of that. Okay, so again, your book is called Care Protect Grow. That’s the main title, the subtitle is empower your family through special needs financial planning. But would you walk us through those three terms and what they mean within the context of what we’re talking about today?

Mary McDirmid:
Yeah, totally. And this is how we present all of our content to different groups and conferences, but we like to put it in the same kind of thing. Like, can we put it into categories and make it absorbable for everybody? And the care section is very financial plan, support plan, care plan, and benefits. And so that is that big thing that I talked about where like, give our kids a great life, keep them benefit eligible if they are on them, and then What is supporting that? What financial is supporting that? What like continuity of finance and continuity of support, right? So that’s kind of our section of tying it together. The protect section is where we hear a lot about. So special needs trust, what estate plan documents do I need? I call it the party section. We’re gonna talk about tax, legal and insurance. Like everybody wants to talk about those topics, right? So you’re like, well, you just put my three things in one bucket that I don’t ever wanna talk about. But they are important, right? Like we need to, that’s why they’re in the protect section, because tax, legal, and insurance are very protect based, right? And then the grow section, we throw investments, personal goals, and I put relax and enjoy. It’s even hard for me to say relax and enjoy. I think the relax and enjoy for us is so different as parent, I like to call parent caregivers. Like it’s a different job being a caregiver is a different job than being a parent. And so like, I’m always like, yeah, like truly taking a nap on my futon. Like this quarter I had three days a week, I have to spend 30 minutes on myself. Like that’s an actual quarterly goal I have. And that means like napping on my futon, taking a walk on my own. It’s not picking up Ruth’s prescriptions. That is not for me. That is for my family unit. And so like, I think when we think of goals for the family, it involves all the family members. And there is money involved. Like how is your money invested? Is it tied in that growth section? Because there’s gonna be conflicting goals. There’s going to be things we’re gonna have to work out and money’s always hanging out. And so we gotta figure out like, how is it invested? Are you having the habits in place that you want to reach X goal? And then how is it all working together?

Debbie:
Yeah. It’s a lot like it feels so complicated to me. Like, again, these are things that and I’m sure I’m not alone here, which is exactly why you wrote the book. But you know, you said in the book, special needs planning isn’t about checking boxes, it’s about building a thoughtful integrated roadmap for the whole family. And you know, and within that one of the things that really jumped out at me is the issue of siblings. And, you know, you have a sibling who may have additional you have great just to say there are, you know, case studies within the book where you kind of share experiences of families that you’ve worked with, but thinking about the responsibility or the role of a sibling, especially like down the road, you know, what that looks like. So could you talk about that particular situation? Because it’s really complex.

Mary McDirmid:
Yeah, we take the sibling relationship, I would say very seriously. When I describe parent caregiving just now, it is the same to pass on to a sibling, right? So I got assigned to be a parent caregiver, right? That just happened with the diagnosis we had and all those things. But if I’m passing this job on to someone else, I really would like it not to be her. Ruth’s sister, to be really honest. Like if that sibling relationship can last as long as possible where they are siblings, I want to preserve it. don’t have others to take the spot of a backup guardian or a trustee for Ruth’s care when I’m not around, I am going to give Charlie the most, like not perfect package, but I’m going to do as much hard work as I can to make sure she’s not taking on all of this from trailhead one, right? Like I blazed a trail for her and I’m going to leave you this treasure chest of things that I’ve, as much as I possibly could figure it out while I was alive so that this isn’t, I don’t want to leave you, I’m not going to leave you a mess. That’s really important to me if that is the role that the sibling wants to take. Now, I tell this story a lot because it is very like you can feel it in your bones. But like I was driving home on a Friday and all the stuff happens when you’re driving your kids home on a Friday, right? And Charlie says to me, she’s five, Ruth is three. I want to take care of Ruth. And I was like, super cool. Like we have so much stuff to do today. Like we have dinner. We got lots of stuff. She’s like, no, when you and dad are dead. And I was like, Disney movies have ruined everything for my kids. They just think we’re gonna go off on a boat in Frozen and die and they’re gonna have to fend for themselves and there’s a prince and things are gonna work out, right? So I was like, started crying and I’m like, keep it together and I’m like, hey, I really want you just to be her sibling. That is your job. I want you to go start a fire in the basement. I’m allowing you to get in trouble with your sister, because that’s your job. It’s me and dad’s job to take care of Ruth. for as long as we can and we’ll talk about stuff way further down the line when your brain is fully formed. And it works, that works at that time. And now when they are fighting, they’re having a hard day, it’s when my older is trying to mother her and I go in and I’m like, hey, that’s my job. My job kinda sucks, huh, right now? Yeah, you shouldn’t do it. She doesn’t like it. you really don’t like it, right? So like, let’s take a break. Let’s come back. Let’s be sisters. But I will do some moming in this time. And that’s not your role. But older siblings of kids with disabilities, like they feel that responsibility very young. And so that’s, I mean, I only tell those stories in my personal life because like, it comes young, it comes out of the blue. And I really want her to know that she can go. live her life and we will figure this out and she can have there are roles to have if she wants to come back and engage but I’m not talking about that until she’s at least 30.

Debbie:
Wow. Yeah, thank you for sharing that because I you know, I was talking with somebody else about this idea of glass siblings and it is a very complex. It’s a complex relationship. And then when you think about what does that look like down the road and again, some of the case studies that you shared really struck me in terms of the the onus that some parents have an expectation that this is just inherently going to be your responsibility in the future.

Mary McDirmid:
We do get that as well. I do try, as much as I can, tell those stories and be like, let’s wait until they’re full adults. And they have gone through college. They’ve gone through all the things we go through in college. They’re finding a spouse. They may have their own kids. There are things that I want them to have in their life, at least the freedom to think about it. If that is also not their path and they do want to take care of their sibling, I’m for it. I just want them to be full adults before they make those decisions. Or that’s like an expectation. But yes, we have a lot of families that are like, this has always been talked about. I’m like, OK, there are multiple roads. So let’s make sure that they know, as long as you’re comfortable with that. And we are doing this planning to have them be a part of it, but not a required or the most intense job or in whatever way we can preserve the. sibling relationship, I am really conscious of it.

Debbie:
Yeah, yeah. So we’ll wrap up shortly. There are two last questions I wanted to touch base on one is, I’d love it if you could talk for a few minutes about self advocacy. You wrote in the book that the goal of advocacy should never be to build a plan for someone, it should be to build a plan with them. So can you talk about how you advise or support families and helping kids, our kids learn how to be their own best advocates?

Mary McDirmid:
Yeah, I think if you are in one of the Medicaid waiver systems, there are going to be basically required person centers plans. And I’m not against that, but I think it focuses so much on the person with the disability that others might get lost. And so we are trying to plan for everyone in the family. They can’t not be planning for the sibling, and they can’t be not planning for my retirement. I can’t work forever, and I’m not going to live forever. and I will get sick at some point. Those are all variables. I just can’t not do that. And so I think for us, we really like to have a newer concept coming from the East Coast called a micro board. And so this is a legal entity. It is official meeting minutes. It’s basically a board of directors around the person with the disability. They can run the meeting. They can make the agenda. They’re telling the board what they want their life to look like. And the board’s job is if we have funds, if we have the right people in place, if we have all the systems working, these should be fulfillable, right? And so it is a way for us as parent caregivers also to think, there can be a group of people for continuation of care, along with knowing the trustee is in control of the finance, and these are all the systems working together to support that person, it even makes me feel relief thinking about a group of people that would, because I really honestly think when you write down that thing at the beginning of the care plan, it’s going to be in categories, and there’s going to be four human beings that probably need to take the job of what you guys are doing, right? So, How do we actually give them a structure to step into where there is a project manager? There’s a medical person. There’s a person for fun. Like, great, I want a person for fun. We’re just gonna need fun. So we need a fun board member on her micro-board right? Like maybe just a wonderful audience member she can sing to and tell all our stories to, because that’s also gonna be needed, it is like a person-centered plan, but like all these board members’ job is to make sure the plan you have in place for them will be continued past you.

Debbie:
I loved that concept. you know, we talk, until we often talk about creating, you know, your advisory board or your, you know, a high Jedi Council or just your people. And so this idea of a micro board jumped out at me as being like this formalized group of supporters, which I loved. So okay, let me ask you this last question. And I, I don’t know if I’ll be able to articulate it the way it’s in my brain. But I’m just thinking again, for the audience, listening to this show who have kids of varying levels of, you know, support needs, different ages, different neurodivergence diagnoses, some have medical complications, some don’t like it all over the place. So I’m wondering, is there a threshold or something or a guideline for a parent to consider to know if they need kind of this level of intense planning? And I’ll just say like, I haven’t thought about any of this stuff. Like, I mean, I, we have a will. I felt so adult when we made a will a few years ago, I was like, I’m done. Right. So, but now reading this, I’m like, like, are these things that we should be thinking about? And I’m like, yeah. So I’m just wondering, is there like a, yeah, I guess threshold. I don’t know if that’s the right word, but how would a parent know that this is actually something they need to really invest some time in thinking about.

Mary McDirmid:
Yeah, it’s a good question. I know what you’re asking. It’s hard because it can’t just be benefits. You’re not on benefits and you’re thinking about it, right? So it’s not just benefits that is the threshold. Actually, how do I say this well? Like my daughter has a rare disease that’s lifelong. She will have seizures. She will have a lot of things. Like I kind of know we will need this ongoing. If you have medically complex, this is like a known, I have to keep these benefits in place or I am in big trouble. I will not be able to support this person, right? Actually, the harder to plan for is your audience, your young adult, because are they going to enter the working world and be able to do that on their own? Are they not? Are they going to need our support? Yeah, yeah, yours is actually harder, because we have to plan for two paths and maybe some in between, right? And so, like, I do tell people, There’s not a threshold. I always tell people if they have not launched into a job and they are living at home and that is something we are gonna have to support. If you think you have to support another person for your entire life and beyond, you need to do some planning. Benefits or not.

Debbie:
Yeah, okay, that’s really helpful. Thank you. Yeah.

Mary McDirmid:
Right? Yeah. And like, I think the one, the podcast I listened to this week that really touched me about you for yours was the motivation, Dr. Ellen with motivation.

Debbie:
Dr. Ellen Broughton, yeah.

Mary McDirmid:
Yeah, and I think this hits on some things where we have a lot of clients in these 20 to 30 states, because these kids went to school in COVID. They are their brains aren’t like that’s not a permanent thing. They think, oh, this is how we can live at home now all the time and just like this is our life and this is great. And to me, there is a point of friction between disability and motivation. And a lot of our families between 20 and 30, I think, are feeling that like I don’t think this is a disability thing that they can’t go to work. I think this is a motivation thing. I was like, I agree, but you’re still supporting them. So my point to you is like, if you’re still supporting another person and you think it’s going to be long term, I think you have to do the planning.

Debbie:
That’s a great answer. We’re gonna wrap up but before we do, I want to just mention for listeners, if you haven’t listened to my episode with Kelly Coleman, that’s one I will link to in the show notes. She wrote a book called Everything No One Tells You About Parenting a Disabled Child and it’s a nice I would think companion to this book. And a good listen as well. So definitely check that out. And the book that we’ve been talking about today with Mary is Care Protect grow empower your family through special needs financial planning. Is there anything that we didn’t, you speak all the time, is there anything that you typically share with listeners or with audiences that we didn’t touch upon today?

Mary McDirmid:
You’re doing the best job you can, right? Just coming to listen to this podcast or going to a webinar or engaging with our team full time, whatever the threshold you are ready for, just do it. You’re doing the best you can with the time you have, right? Like we’re doing all the world’s most okay-est moms and dads and like you’re doing a great job.

Debbie:
I love that, most okay-est, perfect. Where can listeners connect with you and learn more about your work?

Mary McDirmid:
Yeah, we are at all needs planning.com is our website. We have a Facebook group as well. You can find it through that search. The care to protect grow book is on our website and it is launched May 12th. And if you have groups, we do a lot of speaking specifically conferences that I’m a parent of a rare disease. So I have a lot of rare disease conferences in my books. But if you are getting questions like this and you are in control of some kind of agenda for your conference, we would love to be included.

Debbie:
Great. Thank you. And listeners, again, I’ll have links in the show notes pages to all of those places to connect and to the book. And Mary, thank you so much. Such a fascinating conversation. I really appreciate everything you shared. And also, again, that you are sharing your gifts and talents for translating this material for the rest of the world. So thank you.

Mary McDirmid:
No, thank you. I love this podcast. So thanks for having me.