Intro

SPEAKER_02 0:00

Welcome. This is the Post Secondary Transition Conversation. We discuss the ins and outs and everything in between of the transition process for families of students with disabilities. I'm one of the hosts. My name is Megan Smallwood, and I am a public school transition coordinator. As always, I have a co-host, and who would that be?

SPEAKER_01 0:19

I'm Patrick Cadigan, and I am also a public school transition coordinator. Hey there, everybody. Welcome back. So two weeks ago, we sat down and we started our conversation with financial planner Betsy Larson. It was a fantastic discussion. Betsy explained to us her three buckets of financial planning now, soon, and later. She talked with us about tax management and avoiding mistakes. And there is still more to come with that discussion. So without further ado,

Thoughts on Guardianship

SPEAKER_01 0:56

and then as I'm hearing you talk about all of this, and this is kind of changing lanes just a little bit, however, I do feel like it segues into a discussion around guardianship, which can be an emotional or complicated topic for families. Do you help families decide whether guardianship is appropriate versus the alternatives from a financial perspective?

SPEAKER_03 1:21

I can. I say that that's far more of a so okay, we have these conversations, and it's not always an easy conversation. I definitely am not a one size fits all type person. I don't think that everybody needs to have a guardianship, and I don't think that nobody needs to have a guardianship. Yeah. I think that it really is going to depend on every single individual person. It can be a financial, I mean, well, I'll definitely bring up the financial side of it. Like, are they a spendthrift? Could they easily be taken advantage of? And then that money and then any money that they have is swept away because somebody was like, I want to be your friend if you buy me a PlayStation. So things like that. So we have those conversations about what they say it's we're doing parents to child. We have those conversations about what they believe that their child can handle. And I I like to bring as often as possible, I do like to bring on the person that we're actually planning for because this is their life, you know, and kind of get their their idea too, if they're capable of it. And some people, some people just that's not going to be possible for them, and some people it will. So I do love the supportive decision-making option where they are far more involved in all the decisions that are being made for them, but they have this trusted group of people that are making those decisions along with them. But again, that isn't always that isn't always going to be the best, the best route. Sometimes guardianship just is the best option.

SPEAKER_02 2:54

Yeah. That's what we definitely tell parents all the options. And I know it's hard because it's they want to know, well, what do you think? Like I can't make that answer or that that decision for you. It has to be based on what works best for your family.

Letter of Intent

SPEAKER_02 3:10

Regardless of it's guardianship or an alternative, I know the letter of intent is very important, you know, and just explaining what the individual details about what people should know. Do you have any suggestions as like what professionals might need to know within that?

SPEAKER_03 3:30

Yeah. So the letter of intent is basically this massive document that tells you everything that a person needs to know about the individual with a disability. So I like to tell parents that it is going to make the time of transition, which is already going to be a really difficult time, easier. It'll still be difficult, whether it's because the parents passed away or just that they're moving into a new place or their lives are changing. It's going to be a difficult time. But this letter of intent, this is going to be a document that has all of the financial details, all of their medical details, all of their, all of the resources that they currently utilize. But more important, I think, is it gives you information about really core information about that person that maybe parents, only parents know. I'll just tell you a small little example is my sister, so she has Down syndrome and autism. She can have a really bad day if just her sock seam is off. So that's something that they have in their letter of intent. I mean, I'm gonna, I'm her successor guardian, so I already know this about her. But in their letter of intent, they have if Rosie seems to be having a meltdown, check her sock. And then that could make or break a day. Yeah. Honestly, she doesn't wear socks very often at all. But it has like all of that really like nitty-gritty information that whoever who so whoever the next caregiver is going to be, they know how to best care for your child. Yeah. That you it's all the information that only a parent would know on a document. And a lot of parents are really, really intimidated by it because it's a lot of information. And I always just tell them, how do you eat an elephant one bite at a time? Like just little chunks. Just sit down for 10 minutes. That's all you have to do. Or, you know, if it's easier for you to say, I'm gonna sit down for 10 minutes and do as much as I can, or I'm gonna do one page, just choose something that you know that you'll do and just do it. Because if something is better than nothing. And then that's something that, you know, on a yearly basis, we will review it just to make sure there hasn't been any changes. It's usually a pretty quick process to review that, but it is important to review it because life does change and people change and resources change and all that stuff. So you want to make sure it's up to date.

SPEAKER_02 5:45

Yeah, I've encouraged families, you know, even as young as 16 as they're starting to think ahead to the future, just start putting things together. I said it's kind of like when you go out for the night on a date night and you have a babysitter coming in. You need to have that place that they can go to find all the important information, the phone numbers. But this becomes like a handbook to understand your young adult so that if God forbid you weren't there, someone could walk right in and pick it up and life can go on seamlessly. And like you said, it's all those little things that no one else might know, but it's important to them. So yeah, it's it's very important.

SPEAKER_01 6:19

In regards to the letter of intent, do you have a format that you follow, or does it really depend on the individual that that letter is being written for?

SPEAKER_03 6:29

So I definitely have a template because I don't want people to miss anything. You know, they might write down all the things they know about their child, but forget that you also want to say, okay, they go to this church every Sunday at this time. Something like that. Like this, all these different things are, or they they go bowling every Wednesday with these people. Yeah. Or, you know, who their doctors are, what medications they're on, all of that stuff. So I do have a template, and then some things are gonna be we we don't fill it out because it's not applicable. Yeah, I usually just give everybody the template

Legacy Planning

SPEAKER_03 7:01

that I have.

SPEAKER_01 7:02

Well, and all that it's funny because as you're talking about like the individual and we're hearing all those individual stories and like all those little, those nitty gritty details. It's I remember in a previous conversation that we had had, it was talking about legacy planning, knowing those details, knowing what to bring up, knowing what to write down. Legacy planning can be pretty emotional. I had told Megan recently in a conversation that we had had that kind of hovered around this that my wife and I had sat down to do our planning, and we have two neurotypical children. Speaking with a lawyer about that, and kind of like what you were saying before about this building things out and asking questions and having this conversation. How do you guide families planning for a future where they're not gonna be there anymore?

SPEAKER_03 7:56

Yeah, I mean, it can get very emotional. So oftentimes when an advisor comes to me and says that they're curious about getting into this field or niche or whatever you want to call it, I just say you have to be very compassionate and very understanding and very empathetic. I have oftentimes I have people come to me when we start these conversations, they break down and you just have to sit with them in it. They're allowed to feel their feelings. I'm not gonna try to pull them out of it because it is an emotional, really heavy, heavy topic. I mean, I have I have a daughter too, with the thought of me not being here to see her get married or to see her go on and do these things, it it makes my my chest tighten up. So these very real conversations that we're having with these families who likely they will have to, I guess when you think about like a toddler versus like an adult child, you are so much more protective of that toddler because you know that they're gonna they could potentially hurt themselves.

SPEAKER_04 8:52

Yeah.

SPEAKER_03 8:53

I think that these families that have children with disabilities are constantly in this protective mode. The thought of them not being there to protect them is terrifying to them. So I think just walking them through it and being really, really okay with it taking time and you just sitting there and in it with them while they think about these things, you eventually get through it. But it it does take some time. And I and I just reassure them that it's okay. You'll feel what you're feeling. It's okay. I'm here, I I've got the questions, I'm ready whenever you're ready. I hope that answers your question.

SPEAKER_02 9:29

Yeah, well, and I think you you kind of answered the next question we had about like protection planning for those what ifs, like and the conversations that families want to avoid, but they really do need to address sooner than later. I think planning out who's going to fill those shoes, what it's gonna look like.

Other Conversations

SPEAKER_02 9:50

Is there any other conversation you think parents really or families try to avoid when you're talking with them?

SPEAKER_03 9:57

I actually have a client who is at she's a sibling actually, and she she's sort of taking the head and making her parents do the planning for her for her sister who has Down syndrome. And the parents have been very reluctant. And it makes because it just it just feels like it's too heavy of a topic for them. Like we don't, you don't have enough, and she's just gonna live with me forever, and everything's gonna just everything's gonna stay the same. And the sister is like, no, we need to start planning for if things don't stay the same. Sometimes it's not even avoiding, it's just not knowing that the things that they need to be thinking about. We mentioned it before. Some people do avoid having those conversations with their families. You're going to be the successor guardian, you're gonna be the trustee of the of the special needs trust. And then when their parents pass away, then it's all thrust upon them and they're like, I don't even know what to do. They might even get too scared and say, I'm not doing it. And then that can be a whole thing. So I think having those conversations with the family is going to be really important. I think that it's also really important to say we're talking about a who's gonna be the trustee of the trust. What you can do is you can actually say, okay, say that you've had a siblings with one has special needs, one does not. You can tell your daughter she, you're gonna be the trustee of the special needs trust, but we're also going to have this corporate trustee come on as the secondary trustee because they're gonna know all of the rules and they're gonna be able to do the taxes and all the distributions. And then you can just kind of be there as the person that's kind of like the middle person. What's also beautiful about a corporate trustee is it can help with a lot of like family fights. So, for example, I had a client who the person with a disability needed like wanted a distribution for something to buy something they shouldn't have they shouldn't be buying. And instead of the sister having to say, like, no, I'm not gonna give you the money, she was able to say, like, the corporate trustee won't allow it. They're kind of a scapegoat. So it allowed the the brother and sister to have to still like maintain their relationship and then just saying, like, the corporate trustee is the bad guy, not me. You know, that's a big one.

SPEAKER_02 12:00

I think updating it too, because I know like just from my own personal experience, my family, my parents, we have guardianship of my sister, and they did it all in New York when we we lived there when I grew up and then moved to Maryland. And it was just this past year, even though they've been here for many, many years, that they finally went and updated it. Being in the field, I kept telling them it's important. God forbid something happens, like it's not updated. She still lives in New York, I'm down here. But I think it was just something they dragged their feet on because they're like, well, we did it already. I don't want to go through the process again. I have to find another attorney, I have to sit down, I have to plan, I have to do papers. So another one that people don't want to come back and revisit the conversation after they've already had it once.

SPEAKER_03 12:47

First, they might not know they have to go get it redone if they move to a new state. And then it should be updated every once in a while, or at least reviewed regularly. Reviewed. Um and then sometimes a lot of people they go to see an estate attorney and then they get all these all their documents are in place and perfect, and then they never actually fund the trust. I know that it's really important to go see that. I always have my clients go get their estate documents done basically right away. Uh, and then they come back and see me. And the first thing that we do is go over beneficiaries and making sure that everything is funded properly. Uh because a lot of times people will go see their estate attorney, they get all their documents, they put it on the shelf and they never think about it again. And then when they pass away, it's all gonna blow up in their faces and none of their wishes are going to be fulfilled because they didn't actually do the second part.

SPEAKER_02 13:36

Yeah.

SPEAKER_03 13:36

So yeah, those are some big key things. But I don't know that it's people avoiding it. I think those people maybe don't they don't know.

SPEAKER_02 13:41

Yeah, you don't know what you don't know.

Pease Consider Support

SPEAKER_02 13:46

We hope that you find value in our conversations and we'd love your support. You can visit our Buy Me a Coffee page to help support the show. Link is in the show notes. Contributions help offset the real costs of producing our discussions, things like online hosting, equipment, and ongoing content development. So we can keep bringing you helpful, accessible transition information. No pressure at all, but if you're able, every bit truly helps. Thanks for listening and giving our community a voice.

Planning is necessary

SPEAKER_01 14:16

Betsy, one of the things that I heard you say earlier when you were talking about your client, you had mentioned how the family had communicated that they feel like they didn't have enough. So when it comes to families who don't have significant wealth or assets, what do you say to reassure them that planning is still a good idea and and necessary?

SPEAKER_03 14:40

Normally there's a there's going to be a house involved. Normally there's going to be cars and all of this stuff. So that's all stuff that we have to kind of flush out. But also just going to somebody who kind of understands this area and even understands different resources that might be available to help if they don't have a lot of money to leave. We can find resources that might be able to supplement some stuff. You know, whether it's looking for Section 8 housing if they're able to go live on their own, obviously making sure that government benefits are always going to be preserved because that's going to be so crucial, having Medicaid and SSI or SSDI. A lot of people don't know that as soon as they go on Social Security, their children will start to be able to get a benefit off of them. And so they might not even mention it to the Social Security office that they've got a child with a disability who's who might be able to get something from their or get half of their social security benefits. So there's a lot of things that it doesn't have to be like full financial, necessarily financial planning, but sitting down with a financial advisor who at least knows these things that you can think about. Like you might not have a lot of money to invest, but at least you can say, this is what I've got. What can we do? You know, that's going to be a crucial thing for the family to do.

SPEAKER_02 15:58

You bring up a good point because we just had a workshop with that one over SSI and SSDI. And I think just in our role as transition coordinators in the county, like we know, okay, the student turns 18, we tell the family to apply for SSI because now they're technically an adult. But I think a lot of times even we didn't have the knowledge that it could benefit them to look more at the SSDI that a family member or the the parents receiving or if they're retirement and like those logistical things, like to have someone to kind of educate them on what it all means because you get the paperwork from Social Security. I just sat with a family member or a parent yesterday who, you know, she's trying to reapply it because he was receiving it prior to 18 and now he's 18 and she has to justify he still receives it, and it's just the most confusing paperwork, and it has to be due back within like 10 days, and she was very anxious about getting it returned because she didn't want to mess anything up. So I think it is important to be able to sit down, like you said, and kind of lay out here's what I have, what do I need to know? Yeah, exactly.

3 Things to get started

SPEAKER_01 17:06

I feel like that that segues very comfortably then. We have a parent who is listening to this conversation today and they are feeling completely behind, they don't know where to start. What could you say to them? Three practical steps that they could that you could recommend that they could do just let's say this month.

SPEAKER_03 17:25

Well, you can get started on that letter of intent right away. You don't need a financial advisor. If I mean if any of your listeners out there even want to contact me and I can just email them my template, it doesn't have to, I can at least just give them the template so they can at least get started on that letter of intent. That would be huge. Opening up an Able account. If you've got a child with a disability, just open it and put a little bit of money in there. It doesn't have to be a lot because you can invest that money too. If you're if you're not going to be using that money anytime soon, invest that money and have it work for you. Have it grow tax-free so that it can come out tax-free. Those are two, and then I mean, honestly, if if they don't have any estate planning done, they need to start looking into that. Those are three things that I have people start doing immediately. I often say, like, I can't plan for you until we have the estate plan, it is going to be sort of the foundation of where our planning is going to start. So I would say, I know that maybe the estate plan can't get done this week, but get started on that letter of intent, open that ABLE account, and schedule a meeting with an with an advisor and make sure it's an advisor that understands this area.

SPEAKER_02 18:32

I think those are good points.

No shame in where you start

SPEAKER_01 18:35

One of the things that always strikes me about, and I've mentioned this to Megan several times, is again, anytime we have these financial discussions, I am not gonna lie, I glaze over because you start talking about tax plans and and special needs trusts and able accounts and like I I appreciate the ability to break it down like almost like conversation by conversation, because as soon as you start talking finances, I've checked out.

SPEAKER_03 19:01

Yeah, you can imagine how the parents feel.

SPEAKER_01 19:04

Yes, exactly. Individuals, yeah.

SPEAKER_03 19:06

Yeah. I mean, I think that that's why I think that stories really help. You know, if I can become my clients with and say, like, listen, I've had this situation before, and here's how we how we dealt with it. And I think that it it helps them understand it better and it helps them not feel alone. Yep, similar situations. Yeah, like I I don't want parents to ever feel like maybe embarrassed that they haven't done anything yet or any shame at all. I'm always like, you know what? We can only move forward. I like to live my life by that. Like, you know what? If I made a mistake, I learned from it and I move forward. That's all you can do. So let's not let's not be mad at ourselves about what we haven't done. Let's just move forward. Let's just start, let's just start now.

SPEAKER_02 19:49

That's what I tell families when they come to us and they're like, okay, I know I'm behind the ball. I'm like, nope, now is the perfect time. You're in the right mindset. We'll get started and we'll just look forward.

Story to tell

SPEAKER_01 19:59

And then Betsy, I know this has kind of taken a little bit of a step back, but you you mentioned stories. Why do I feel like that there is a story that you need to tell? You have four siblings. Yes. All with special needs. So tell them.

SPEAKER_03 20:14

Yeah, I have more than four. So so I actually have 12 siblings. I am one of 13. There's one boy and 12 girls. Oh, wow. Um my parents, when I was eight, seven or eight years old, I can't remember how old she is right now. My parents started adopting. So I actually have seven adopted siblings. And the four sisters that have Down syndrome, they're all adopted. But like they were adopted when we were all like little kids still. So definitely grew up as just one gigantic family. And from a very young age, I told my that I was going to be the in charge of my sisters, and none of my other sisters were allowed to. So I, you know, my my daughter knows that I actually we are in the process, and this is something that I'm starting to encourage with my clients too, just because I and I didn't even think about it until I started doing it myself. Two of my sisters are going to actually come live with me in a few years. As soon as my one of my sisters graduates from her adult education program, they're gonna move in with me. There's Janie and Agnes. Agnes is all gung-ho. She wants to graduate, she wants to come live with me. Janie is much more of a homebody and she loves my dad and she loves her dogs and she doesn't want to leave. So, what what we've actually started right now, years before this is actually gonna happen, my sisters come and stay with me one weekend every single month. So they can start to acclimate. And so now when I go over there, she'll come give me a hug and she'll say, I'm gonna live with you, I'm gonna live with you. Oh, she's starting to like it's starting to really start to settle in with her that she's going to come live with me in a few years and we'll go see my. And dad, all the time, so don't worry. We're not that far away. But this is gonna be your new home. And I think that that maybe you guys, as transition specialists, do this, like half people do this already. But I never really thought about if you if there's going to be some sort of a transition like that, why not start it real slow and get people to really get the person who this all revolves around, get them comfortable with the idea.

SPEAKER_02 22:24

Yeah, I will say we work with some good providers who do just that. They'll have them come visit the the house, they'll have dinner, they'll have them come stay for a night, you know, and slowly acclimate them over. But you're right, like it does take time. I know I have to laugh because my sister, you know, she lives in a group home in New York, and my parents moved down here to be near their grandchildren. And I would say to her, you know, Ashlyn, like you're gonna come live in Maryland one day too. And she just looks at me and goes, no, thanks.

SPEAKER_04 22:50

Like she happened.

SPEAKER_03 22:51

Yep. Yeah, because they you know, people are comfortable, they're setting their weight. We'll work on that, but okay. It's also so interesting because some people they really struggle with like housing. I've noticed that like with different meetings that I've had, and where will my child go? Are they gonna go live with a sibling? Are they gonna live in a in a home? Are they gonna live on their own? Things like that. And that's another one of those conversations that I have with my clients that's really gonna be based on the person. Well, I have four sisters that have Down syndrome, and two of them are gonna come live with me. One of them has no interest, she wants to go live in an apartment, which will eventually end up being uh a home because she she can't necessarily live on her own, but she does not want to live with her sisters. They're all younger than her. She's the oldest, she wants to be on her own. And then I've got a sister who the youngest sister that she's still kind of a we're she's up in the air. We don't know yet. She's in a move with my payments for a while. But like every single person, we need to make sure that that everybody understands that we're all individuals, whether you have a disability or not, and we all have our preferences, whether you have a disability or not, and let's take their wishes into account. So exactly. I agree.

SPEAKER_01 23:58

That is fantastic. Betsy, we can't thank you enough for having this conversation with us. Real quickly, tell everyone how they can find you.

SPEAKER_03 24:06

Yeah, so you can find me at special needs advanced planning.com or you can find me on YouTube, and I think that that is youtube like dot com slash elisabeth Larson. Oh gosh, I should probably know that. Or you can shoot me an email at elisabeth at cpsplan.com.

SPEAKER_01 24:26

Very cool. And of course, there will be a link in the show notes as well. Well, again, we cannot thank you enough. This is a wonderful conversation. Yeah, wonderful conversation. Again, it's always one of the harder ones for me. So I I appreciate all of the input. Yeah.

SPEAKER_03 24:42

Oh, I will throw in there, and I I don't have the exact date yet, but I'm going to be having a I'm going to be putting on a webinar probably sometime in mid-July. So if anybody, I'll send it to you guys, all the information, so that if you want to send it out to your all of your listeners, the more people that that join, the better. They're going to get the letter of intent template. They're going to get a bunch of other documents just for attending. You know, it's obviously just for educational purposes. I think that it'll be really good and very informative.

SPEAKER_02 25:07

Yeah, definitely send it our way. We'll spread the word. Love it.

SPEAKER_03 25:10

I will.

SPEAKER_01 25:11

Well, thank you, thank you, thank you.

SPEAKER_03 25:12

Yes.

SPEAKER_04 25:12

Thank you, Betsy. Yeah.

Patrick Outro

SPEAKER_01 25:22

Our discussions are everywhere. Apple, Spotify, YouTube Music, and others. So hit that follow button and you won't miss out. Please help us spread the word about our discussions by leaving us a review. Links to the information from our conversations are always in our show notes. Surf to our sister website, www.postsecondary transition.com. Full of information and links to more resources. Our YouTube channel contains curated videos that revolve around transition, including playlists for guardianship, alternatives to guardianship, able accounts, and more to come. Thanks so much for your time spent with us, and we look forward to talking again soon.