The Elephant In The Room

SPEAKER_00 0:43

Welcome back to Holding It Together kinda podcast. I'm your host, Michael Macnac, and today we're gonna talk about the elephant in the room that usually lives in a folder at the back of your filing cabinet, or more likely than that, in that quiet, nagging corner of your mind that keeps you awake at uh two o'clock in the morning. We gotta talk about special needs planning, folks. Now, if you just felt your your chest tighten up a little bit, you know, you're not alone. Mine did too a little. For most of us, planning usually means deciding what's for dinner or where we're gonna go on vacation. But when you're a caregiver, planning is a different beast altogether. It's a complex, emotional, and frankly, intimidating puzzle of legal terms, financial acronyms, and often the hardest part is confronting a future where we aren't there to be the primary holderer togetherer, right? We worry about big stuff. What'll happen to him or her when I or we are gone? Where will they live? Who will make sure that they have their favorite snacks? Will they be safe? But here's the thing. We can't predict the future, but we can certainly protect it. Today we aren't here to drown you in legalese. We're here to take that giant mountain of what-ifs and break it down into a series of kind of like manageable chunks, if you will, bite-sized chunks. We're gonna talk about how to build a safety net that catches your loved one without catching you up in this whole web of anxiety and stress that keeps you up in the morning. So if you've got 50 bucks or 50,000 or 500,000 to leave behind, and whether you have a kid that's 15 or a kid that's 50, you need this conversation. It's about dignity, it's about peace of mind, it's about making sure the life you built for your family stays built. All right, so take a deep breath, everybody. We're gonna figure this out together.

Why Planning Is An Act Of Love

SPEAKER_00 2:45

Hey everybody, it's Mike McNeck back here again with you, and I really want to emphasize today that this idea of planning for the future for a loved one, planning for a loved one's special needs, it is absolutely one of the most profound acts of love a family can undertake. It means you're being introspective, it means you're being communicative, it means that you are giving forethought to not only the family need now, the family need in the future, but also those around the family who may be forced to come in to help or may not, who knows, you know. So one of the things that we need to balance when we're talking about special needs planning is the technicality of it, the must-dos versus the emotional side of it, which is the how-tos. I'm very much an emotional how-to kind of guy. I'm very much a practical side of things as opposed to technical. So that's why I love the fact that my good friend Rebecca Iantoni is back here with me today. If you guys remember from our very first emergency broadcast, Beck was here. She's she's been a friend of mine for 40 plus years, and our careers have she's got the career that I always thought I wanted. So funny. Yeah, she she's she's she's really an inspiration to me, and she helps so many, so many, so many people in this world of specialized needs and and family help. And she works a lot with mental illness, and particularly obviously within the court system because she is an attorney extraordinaire. Hello, Rebecca, and welcome back.

SPEAKER_01 4:37

Thanks, Michael. How are you?

SPEAKER_00 4:38

I'm good, I'm good. Good. I'm excited to talk to you about special needs planning because I don't do a lot of it. I never did do a lot of it because frankly, it's it's overwhelming to me. It's overwhelming and intimidating. So if it's overwhelming and intimidating to somebody like me who's been doing this for 30 years, I can only imagine some of the people that you run into who are trying to roach this subject for the first time. And and granted, you know, we're talking there is a socioeconomic factor to this, but let's strip away the socioeconomic factor and say, you know, specialized, I will say at the outset, specialized needs, special needs planning should not be preserved or reserved for the rich and famous. Special needs planning is something that we all need to undertake. Would you agree with that sentiment?

SPEAKER_01 5:30

Totally. Yeah. Yeah. And and mostly because, you know, during when when we're raising, you know, so we talk about it from kind of two populations of people, folks with, you know, the cognitive impairment, the intellectual disability, and then the folks that have the mental health impairment or the mental health issues that that kind of impede on their ability to provide for themselves in a in in a way that you know doesn't

Public Benefits And The House Of Cards

SPEAKER_01 5:56

cause parents to be concerned about their future. And so a lot of the times, or you know, most often, we are able to access public assistance benefits, you know, Medicaid, SSI, you know, some kind of social security benefit, you know, food stamps or whatever public assistance, Section 8 housing, whatever these public benefits are out there, you access them and you create this sort of house of cards, like this perfect house of cards of access to services and benefits and health insurance and all these things. And so the goal here is when we as parents or family members create this house of cards for that loved one or a family friend or whomever. What we don't want to happen is to have a windfall of money come through and just wipe out those cards after we're gone and then and then have a whole new world of hurt essentially to sort out.

SPEAKER_00 6:57

And so let me let me break that down and put that into a very common question that I have, yeah, and I do in my practice. Because you know, my practice is really working with holy calira and now how we got to react to things that are going on now. And so special needs planning is something that I I do engage in in this these conversations and understand exactly what you're saying. Yeah, because there are, yeah, we want we want to create this perfect ivory tower, but all of a sudden money comes in, and holy crap, now the ivory tower is gone, and the the stairs leading into it. And and this issue comes up a lot, and this is a tough one, and but we'll get it out of the way right away. I wrote it down as you were speaking. Families of means, thankfully, can afford private insurance. Okay, let's talk about health insurance. I will say this that uh when we are talking about especially folks with mental illness and and what what their needs are, private insurance is wonderful because it's there and it's it's it's covers a lot, but I would I would say that the the resources that private insurance is willing to offer are limited. However, on the state side, the the the government side of insurance, there's a lot of resources out there. Now we could talk all day about the log jams and how hard they are to get into them, but they are there. But the the harder part is to get those the the the insurance to begin with. So it's hard to get state insurance, but there's a lot of resources. It's easy to get private insurance. Well, easy, quote unquote, easy. And the what they'll what they'll pay for is somewhat limited. So at some sometimes we find ourselves faced with a dilemma, and this goes to what you're getting at with our with our house of cards or our ivory tower. Sometimes does it make sense to forego private insurance as and take state offered insurance or even Medicaid?

SPEAKER_01 8:59

Yeah. So I mean, in the in the mental health space as well, I mean, so one thing to understand is Medicaid, you know, we we talked about this in our prior podcast. Like Medicaid is federally funded and state administered, meaning that the states get to take this amount of money from the feds and decide what programs it's going to fund. And a lot of times those those programs that it funds are waiver type programs. And so, like mental health, the mental health waiver, you know, the developmental disability waiver, the um acquired brain injury waiver. So there's these weaknesses.

SPEAKER_00 9:33

You know what, though? Let me stop you. Explain what that waiver concept means because it people don't don't on don't necessarily know.

Medicaid Waivers In Plain English

SPEAKER_01 9:39

Yeah. So the waiver, the waiver is is a program that provides certain certain it targets a certain group of people for whatever, like the DDS waiver, the Department of Developmental Disabilities waiver targets folks with an IQ lower than 70. So people with an IQ lower than 70 can qualify for these services. And there's like rules and requirements.

SPEAKER_00 10:01

Acquired brain injury, traumatic brain injury wave.

SPEAKER_01 10:04

You have a brain injury, and it's not that you were born with a birth defect, it's that something happened, you acquired it during life. Mental health is, and this I I always mess up, it's like a pervasive. What's the standard for mental health?

SPEAKER_00 10:15

The pervasive ongoing clear and persistent? Is that the yes?

SPEAKER_01 10:20

That's it. Yes, yes, yeah. I always get those terms. So you have to, in order to access these services through these waiver programs, you have to have that foundation of Medicaid eligibility. And so to get Medicaid eligibility, so and a lot of the times people with of means will say, no, no, no, we'll just we'll just wash the problem in money. And the thing is, is that you you can't always buy the services that the waiver provides. You know, the waiver provides a tremendous amount of support and and is really targeted to wrap around the individual and and give them the support based on that, those very needs that somebody with with a mental health issue has or somebody with a cognitive impairment would have. So accessing those services for you know is is often like vitally important because you know, there's just no way to buy those types of services going forward. Now, whether there's going to be some systemic change at some point down the road, I mean, there's never been any really good talk about that because there's just it's a problem that's really hard to solve for. So accessing and being eligible for public assistance benefits opens you up to, so when you're Medicaid eligible, it opens you up to that house of cards, which is often the way people think about how somebody is going to survive. Because the one thing, you know, I'm a special needs mom, you know, my youngest is cognitively impaired, he is autistic, a host of medical issues. And, you know, the biggest concern I have is what happens to him when I'm gone, you know, and that is a common concern. That is a huge concern. And when you have somebody with mental health issues, I, you know, a child with mental health issues, you know, the other concern, another element that comes into that is, oh my gosh, who's going to, who's going to, for lack of a better word, put up with this or or manage this or love him or her the way I do, and and just keep pushing through and helping and stuff. So the that infrastructure, that public assistance infrastructure is what gives us as parents a lot of peace of mind in terms of what's, you know, how they will survive when we're gone and we're no longer micromanaging.

SPEAKER_00 12:42

The theory being that these infrastructures that you're describing will be there after we're gone.

SPEAKER_02 12:48

Right.

SPEAKER_00 12:48

You know, that that's the theory.

SPEAKER_02 12:50

Yeah.

SPEAKER_00 12:51

And and we hope that they will be. And you know, history has shown that they pretty much have been, which is which is good. And and folks, they call them a waiver because as Rebecca was saying, when you get eligible for Medicaid, you're found eligible because you have you meet certain criteria in terms of your finances, your income, and how much money you have to spend on your own care. Well, this waiver in these waivers that we're talking about has the have the ability to blow that number out of the water by by millions of dollars in some cases, and say, Yeah, you're still going to be eligible for Medicaid, even though your care is going to cost three, four million dollars, and we're going to take it from this waiver. So technically, you're getting this money, but we're waiving that as income to you, and you are now going to be able to uh receive these resources. So, to Becca's point, uh, you know, when you can get onto these waivers, uh, they are structured in such a way that the resources that they offer are only offered through that waiver. So, folks, money can't buy you love. Very often you can't pay for some of these services, right? I suppose in the in in in the world of big time dollars that people can afford to bring in specialists for a whole bunch of stuff, but that gets really far afield. So, my very was going to be you know, when you sit down with folks, what is the very first thing that they raise as their question? What's your number one concern? And you you nailed it. It's it's yeah, I agree with you that that's when mine too is like we want to make sure that somebody's there. This is when people are asking me to stay on, let's say, as a trustee or guardian well into the future. You know us, you know our family, you know how this whole situation operates. So I understand that, and I also love the fact that you you touched on the fact that you really hope that people that are working with your loved one understand that over the course of time and they stay

Small Clicks Instead Of Overwhelm

SPEAKER_00 16:40

consistent and they understand what your family values are, what your dreams for your loved one would be, more importantly, maybe what his or her dreams would be moving forward after you're gone, you know? Right.

SPEAKER_02 16:54

Yeah.

SPEAKER_00 16:55

But how do we listen? Things we're talking about right now may already be causing this analysis paralysis, right? How do you, in your meetings with families, how do you get people past that? How do you get them off the snide and say, come on, you gotta I don't know, pick yourself up by the bootstraps and I'll you know, I'll walk you through this and we'll do it together.

SPEAKER_01 17:17

Yeah, so I mean, uh of course it's a it's a huge, and I I always say, like, you know, we're just gonna do things in little clicks, right? Like we have this big, huge, vast problem, this huge overwhelming concern that like I can't think about when I wake up in the middle of the night because I will never sleep again, you know? And so we think about we take these huge, massive, massive concerns and we just think about them in little clicks. Okay, so the first click is this, the second click is this, and we're just gonna take them, you know, one little, one little click a time. And so, you know, at a certain point, like when the child is 18, approaching 18, you're thinking about, you know, like, do they need a substitute decision maker or some kind of protective proceeding put into place because they can't, you know, they shouldn't be giving informed consent for medical procedures. So what does that look like? You know, what does that look like when they turn 18? And as they get just past 18, what does transition planning look like as they get out of high school and they're graduating out of the school? What does their world look like in the community? Will they be able to be substantially gainfully employed or will they need some assistance with that employment? Who and then and then kind of who, and then uh, you know, and you just kind of take it, take it age by age by age and not so much like like the long. And at each stage, what you're doing is you're building the foundation that all of these things that are put into place can then go back and rely on and look at. So your house of cards of public benefits and stuff is built on this like solid foundation of like, we thought about it mindfully at the time, proactively, as you say, and I I love that I use that word all the time too. We proactively looked at it, we start to build it slowly and intentionally, and then before we know it, we have this plan that like, and we stay open and honest about it and we're not afraid to talk about. That's another thing that I say quite often is like we all die, right? Like we all, no one gets out alive. Like, so have these conversations, find out where everybody stands on this, you know. Like when we were doing our own planning with, you know, for for our four kids, you know, four kids, and I said to each of them, like, not my youngest who, you know, who has who has the the special needs, he said, I don't want you guys to feel like, and I don't want you guys to feel like you have to take responsibility for him, but I also don't want you to feel like I have excluded you from that decision making. And so whatever your decision is or your thought process is, right now, in this moment of time, as dad and I are doing our documents, like you tell me what your thought process is, and you know, and that can change, but I always want you to feel like you can talk about this and that if you say, no, I don't want, you know, to be part of this decision making, I want to stay a sibling, I don't want to have to be able to do those things, or I'm gonna be too busy off with my family, like I don't want to have to be, you know, worried about these things. That I I totally respect that, and I help families try to understand that what this, what family has to say is really important because their life as a sibling or as a family member of that special needs individual, whether it's mental health or cognitive impairment, has been ruled in a lot of ways by the stability or the health of that individual.

SPEAKER_00 20:33

We we we miss that boat a lot.

SPEAKER_01 20:36

Yeah.

SPEAKER_00 20:36

And when we're talking about the we're we're the care of a family, the care of an individual with special needs and care of a family with mental illness. One of the things that we really miss, and I'm so glad you brought that up because I don't think I would have thought to, is the impact that that care and that special need, that's those outbursts in in some situations, the the attention that is required takes away from the other kids. So, how are siblings and what's the PT, what's the trauma that the siblings are going through being raised in a home? And and then, yeah, are they feeling forced to be? Are they getting parentified without wanting to be? And yeah, absolutely. You know, yeah, it's bad enough that a mom and dad have to struggle with boundary issues to say, boy,

Siblings Trauma And Family Boundaries

SPEAKER_00 21:27

and I see this all the time, boy, I really don't want to be in a position where I've got to be a decision maker for my adult son. Right, I just want to be his mom or dad. And they're and they're not wrong. Some people are all about it, some people say that's great, I can do it. And some people are just like, No, I, you know, it's a boundary thing that I have to feel comfortable with.

SPEAKER_01 21:46

Yeah. And not really here. Yeah. And I also I also think, too, in that in that context of like in the mental health issue, too, more. I think in the mental health arena, more than the cognitive impairment. And I think it's important to draw the distinction between the two because they are two very different, different pillars of of issues. And I think in the mental health space, too, I have seen, at least in my experience, that like sometimes it's not great for the parent to be the decision maker of the adult child because it triggers a ton of stuff. Okay.

SPEAKER_00 22:19

All right. So getting back to it, you so yeah, I think that your your point is very well taken, that there's there's definitely a difference between the cognitive side of the cognitive impairments versus mental health impairments. Yeah. And and the way that that kids and families, from what you see, cling to or rally around a person with the cognitive impairment is much different than the way that a family rallies around or doesn't rally around a person with mental health. I think I think that there's a there's a definite uh distinction to be drawn there and to what extent family members are willing to get involved and stay involved. And and some of this goes to the individual with the impairment, one way or the other. Yeah, what kind of person they are. Some of it goes to I hate the word stigma, but I'll use it here. Just the the stigma of, oh my god, I don't want to, you know, I don't want to get involved with that. So there's a lot there.

SPEAKER_01 23:14

There's a lot that yeah, I think the stigma, I think the stigma is less, and maybe it's just because like my whole world is is involved in this, so I don't necessarily even see see that as a stigma. I think that the the concern is is that like, you know, what is best for the individual? Because sometimes, like, you know, I know I I could imagine like if I was a decision maker for one of my adult kids, like I would trigger them all day long, like with my decisions. You know what I mean? Like, so I think that sometimes a parent, even a parent, isn't a great choice for that decision maker for that adult child because there's so many, you cannot, you cannot not see, like you cannot bring your own set of filters and lived experiences and you know, past story with that child, that adult child. You cannot not see that child through that lens. Right.

SPEAKER_00 24:14

You can't you can't get rid of so all those traumatic things that I put you through when we were in high school, you you are taking them out on your poor kids.

SPEAKER_01 24:22

Yeah, exactly. Exactly. Well, no, I'm I'm taking it out on you because like as I see you now, I am like, I am like, you know, I'm I'm all I'm all triggered up. No.

SPEAKER_00 24:30

I know I had I had that effect on a lot of people back then. So two things here. You know, my work has been, especially over the last four or five years, has really been focusing on trying to reach families. That's why I chose this this medium to try to reach more families because I find myself very frustrated in that I'm I'm putting together a lot of tools, educational and otherwise, and resources for people to use. And and and I know that they're out there and they ask me and they tell me all the time what they're looking for, etc. And I try to create these things for them. And sometimes I get so angry and frustrated because people just aren't taking the stuff from me. And I asked a woman who's in a very similar situation as you, she's also in in our profession, she's not a lawyer, but she she's involved with actually special needs and things along these lines. So you probably do know her. I won't mention her name. She has a special needs son as well. And she said to me over lunch one day, she said, you know, Mike, I think that one of the issues may be that when I have a down moment, I don't want to think about special needs. I don't want to think about getting more educated. I don't I want to have a glass of wine and watch some tearjerker on TV and shut things out.

SPEAKER_01 25:49

Yeah.

SPEAKER_00 25:50

Do you find that to be true for yourself and for your for your clients?

SPEAKER_01 25:54

For sure. Oh, absolutely. That like in and there's actually like a term for it. It's like I forget what it is, but it's it, there's a term for what what we go through in that. And it's like like high high functioning anxiety or something. It's like there's some some some terminology for like why I would be interested to talk to that woman to see like when she pulls into a parking lot, like before going uh going to her office. Does she sit quietly for 10 minutes and just like you know, doom scroll through TikTok? Like there are these things that we that that are like these protection mechanisms that we have to do to kind of like reboot our brains because like it is such an intensity, and you don't know, you don't know, especially in mental health, like it's it can be so unpredictable. You know, in in a way, in a way, the intellectual disability is a different, isn't almost an easier way, a world to navigate because it's a pretty stable, you know, stable disability or stable need, right?

SPEAKER_00 26:55

Like the intellectual disability, it's consistent.

SPEAKER_01 26:58

It's consistent, yeah. It goes it kind of is here. You know what the limitation, you know what the where where the certain deficits are, and you can kind of make you know small gains and things. But but in the in the world of mental health, like you know, it comes at you and it's very unpredictable, and it can be, it can come out of nowhere and turn, you know, you can have this long period of success.

SPEAKER_00 27:18

It can look like many different things.

SPEAKER_01 27:20

Right, right. And and that, and that that is like can be super like exhausting and just in a way that just zaps you of everything because you're so you're so like on high alert all the time. You're so uh alert to like just when's it gonna happen? What's it gonna happen? And the minute your body kind of lets down, it happens and you're like, oh, you know, you're like you're always waiting for the other shoe to drop. Yeah, yeah. And that's that's a really, really, really difficult, you know, it's it's it's it's abuse in a way, but it's you know, abuse in but in a different, obviously, context than like, you know, the way we think.

SPEAKER_00 28:00

To degree, it's to a degree it's self self-imposed abuse as well.

SPEAKER_01 28:03

Yeah, yeah.

SPEAKER_00 28:05

But that's another story for another day because I do want to get into a conversation with you someday in the very near future about caregiver burnout and and what yeah, huge, huge, huge topic.

SPEAKER_01 28:16

Yeah, huge topic and so important, so relevant for this discussion in this audience.

SPEAKER_00 28:22

But last thing in in this sort of pre-planning mode, and folks, as lawyers, one of the jobs that we have is to try to make you think of the things that you otherwise wouldn't have, you know, these these what ifs that can come down the road later that you hadn't thought of. Yeah, our expertise comes in by being able to foresee problems. Um and naturally, I think we can't. I hope you understand, folks, we can't foresee all the potential problems that are down the road.

SPEAKER_02 28:54

Right.

SPEAKER_00 28:54

Rebecca and in her work is a lot better at it than let's say I am in the work that I do. But as the job of a lawyer is to help you folks to start to contemplate some of these things, but not to the point where it is oppressive and pervasive. And right, I think that's important to perseverate about it. But I think one of the things that we should think about in this pre-planning discussion here is we talked a little bit about the family values of family ethics, but but one of the things that you also want to help people plan for, I I would hope, is how their loved one will continue to enjoy life, yep. Enjoy community involvement. It just goes beyond medications and it goes beyond housing and where they're gonna live. But how do you how do you how do you take that into consideration?

SPEAKER_01 29:48

Well, I think it uh it's a combination of things too, because and I had one thought one case like years

When Home Is Not The Best Plan

SPEAKER_01 29:56

ago that was such a fascinating, like really kind of reset my my my thinking in a way. It was a family where and and she was she was cognitively impaired, the the child and there were three siblings, three other siblings outside of the cognitively impaired individual. And the dad had died a long time ago, and the three older siblings had moved out and had kids and were living on their own. And this special needs child, who was like in her 60s at this point, was living alone with mom, and then mom had was not connected to any services, didn't have Medicaid, and like was, you know, was not connected to anything. And mom had a stroke and went into a nursing home. And all of a sudden it became this like like crisis because she couldn't, the the child could not live alone, couldn't live in the house. So this child was now like didn't know, like her her whole world went up in arms because the system that she had had in place with mom, they were like mutual caregivers at that point. Mom goes into a nursing home after a massive stroke, so he's not even able to give any instructions to anybody. This the other siblings have kind of are out in the world living life and raising their own kids and stuff. And so all of a sudden we have this crisis planning now to do for this individual. And, you know, it was like chaos for everybody. It was chaos, like, and it wasn't even, it wasn't even my family, but it was chaos for me because I was like, what do we do? What do you do? And what was interesting, so fascinating, is once we got her settled into, you know, she actually ended up going into a group home type environment. And lo and behold, and she started going to this day program, she's a brilliant artist.

SPEAKER_00 31:42

She's able to do so many things.

SPEAKER_01 31:44

She was like, who knew? And she's now like is the face of like this agency and does all this beautiful artwork and all of these things, and is living this like totally different trajectory. And so I always use, I always put that in my head, especially when a family says to me, We're just gonna keep him home, like as long as we can, you know, like always have a place with home. And I'm like, that's not always the best solution.

SPEAKER_00 32:10

Yeah, is that is that a disservice? I can you know, I think I told you about this. The very first case I was ever appointed as conservator on was this beautiful elderly couple uh who died very close to each other, and they had an adult woman that they had raised, she was 60, she was in her 60s, yeah. She was a complete quadriplegic and completely developmentally disabled and just you know, wheelchair, you know, she had complete knee, complete, yeah, and they took care of every single need for her, and they died in their 80s, she was in her 60s, and they had made no preparations for no preparations, yeah, yeah. And and and as you say, she was everybody's favorite, and she's passed away now. Her name was Carolyn, she was just a beautiful human being trapped in this body that was just anyway, anyway. So it's it you see it, and and you hear these stories of and what you just said just gave me goosebumps because it's like uh you have this symbiotic relationship of people that are they're codependent, right?

SPEAKER_01 33:13

Exactly.

SPEAKER_00 33:14

Bomb is almost as much dependent on daughter as daughter is on mom.

SPEAKER_01 33:18

100 100, yeah.

SPEAKER_00 33:20

Yeah, so it does happen.

SPEAKER_01 33:21

It's so yeah, so so that's that's like part of the plan. That's part of the planning. Those are the little quicks that we're talking about because we're saying, like, hey, like, you know, some of what you've you have pre-formed in your head is in terms of what's gonna happen. Like, let's look at it from a different perspective and say, like, is that maybe not what is the best interest for everybody? And and I think this is where I get a little bit of credibility when I can say, like, trust me when I say like it makes me sick to my stomach about moving my son out of the house and into like, you know, an apartment or something. Like, like, I'm not saying, like, oh, just go and do this and it's great, like get over it, because like I know, like it makes me, like, it makes me nauseous thinking about him in the world, you know? And so I think it's those, you know, it is those little baby steps of thinking, you know, okay, this is this is what needs to be done. And thinking, not not that we're going to micromanage all of those what ifs, but we're going to set a course so that it can, it can, you know, ebb and flow based on, and and we're not gonna compromise that fundamental structure, which is like, okay, if we get you connected with the right services now, those services can change, but you still are eligible. Like all of those services are still gonna be there, even if you have to swap them out at some point, you know.

SPEAKER_00 34:44

Such a valuable, such a valuable thing to say. And I'm gonna quote our guy who's near and dear to both of our hearts is Jack Keys.

SPEAKER_02 34:52

Yeah.

SPEAKER_00 34:54

He and his father were collectively the probate judges in the city of New Haven, probably for a hundred years.

SPEAKER_03 34:59

Yeah.

SPEAKER_00 35:00

That's close to it. It's gotta be close to it.

SPEAKER_03 35:02

Yep.

SPEAKER_00 35:03

And and Jack always one of the things he always said was, nothing we do here is permanent, nothing here has to be permanent. So that's an important lesson right there in and of itself.

SPEAKER_02 35:13

Yep.

SPEAKER_00 35:14

We have to move on to some of the the nitty-gritty about landing that I want you to explain to folks and frankly explain to me. Okay, so let's talk about special needs trust.

SPEAKER_01 35:24

Right. So that infrastructure, that house of cards that we've created, because we've seen why it's important to create that house

Special Needs Trust Basics

SPEAKER_01 35:29

of house of cards of benefits and and access to services and why that's important, and why we don't want a windfall of money coming in from an inheritance or you know, from whatever that will wipe out that house of cards. And so how we protect against that was we proactively plan and we put into place a special needs trust that says the primary purpose of this trust is to supplement and not reduce or replace those public assistance benefits, not reduce or replace that house of cards. So that trust is going to kind of fill in the edges of what it is. So, like, you know, so for example, we have our siblings, right? We have we have a sibling that lives in Texas and our special needs beneficiary lives in Connecticut, and that sibling has always loved the the sibling in Texas. And so that trust can then pay for the sibling to go to Texas to visit with that sibling.

SPEAKER_02 36:21

Yeah.

SPEAKER_01 36:21

Um, or pay for that that Texas sibling to come and visit in Connecticut. You know, it's intended, or there's a treatment that is not covered by Medicaid that would be great if they could access it because, you know, it's it's it may be a little experimental, but it's proven to be really great, you know, and so we can use that trust to supplement, supplement and not wipe out those benefits.

SPEAKER_00 36:45

So that language is very important that the the this the principle of this trust is to be used to supplement the the public benefits and public income that my loved one is is eligible for.

SPEAKER_02 37:02

Right, right.

SPEAKER_00 37:03

Not to replace it.

SPEAKER_02 37:04

Right.

SPEAKER_00 37:05

That's number one. Number two, it's important that the document contain clauses that indicate that the individual themselves does not have ready access to the money anytime they want it. What if and we call that um discretionary versus indiscretionary, right?

SPEAKER_01 37:23

Right. So so what you do, the way you accomplish that is that so trusts generally, and just to like give like two lines on trusts. So a trust is just an agreement. Everybody has this idea that these trusts are like like trusts are like this, you know, obscure concept and stuff. And it's not, it's just like a contract, it's just an agreement. It's agreement between the person who creates it and the person who's gonna administer it. You know, it's just it's between two parties. And so the person is a good thing.

SPEAKER_00 37:49

By the way, let me stop you because that has nothing to do with the person who's getting the money.

SPEAKER_01 37:53

No, no, no, no, no. Right. You're administering it for this, for this beneficiary. The beneficiary is a special needs individual. So let's like use, let's use my my estate plan. So, you know, our we have four kids, three of the kids' shares of our state go outright to them, right? They get it when the second of us dies, they get their share outright. G's share goes into a special needs trust for his benefit. It's a trust that Mark and I have created for G's benefit. And we are the initial trustees because we, you know, it's not going to get any money until the second of us dies. And then Matthew, our oldest son, has when we had that discussion, he said he wanted to be part of that, which was great. He's in law school. Like he, you know, he he's he actually did his side note, his law review note was on housing for folks with mental illness. So we should talk about that another day.

SPEAKER_00 38:43

We should talk to him for sure.

SPEAKER_01 38:44

Yeah. And so, so he so he, as trustee, the special needs trust has language that says distributions to or on behalf of G are made in the sole discretion of the trustee, meaning that's the discretionary standard. So all trusts have a distribution standard. Sometimes you'll hear a health education, maintenance, and support or whatever.

SPEAKER_00 39:06

That's the typical.

SPEAKER_02 39:07

That's the typical thing.

SPEAKER_01 39:08

Right. The most important, and there's tax reasons why that happens that way, but a purely discretionary trust where the trustee has the sole discretion, that means that the beneficiary cannot go back and compel a distribution for health education, maintenance, and support from the trustee. The trustee has the sole discretion on how to distribute it.

SPEAKER_00 39:28

Because if they do have that ability, it blows it out of the water and they're not eligible for the Medicaid and the other the other public benefits that they otherwise would get.

SPEAKER_01 39:39

It's considered, it's considered an available asset for eligibility purposes.

SPEAKER_00 39:44

But that's but that's the crux of it, folks, for everybody who's listening and trying to understand. You're setting up an agreement so that this guy is going to take care, Mark is going to take care of G's money.

SPEAKER_02 39:54

Yeah.

SPEAKER_00 39:54

G doesn't have any way to force Mark to do anything with the money. G can make requests of Mark, but Mark could say no or yeah, okay, here you go. That's a good use of this money that mom and dad intended for it. Because Mark has that money in his grasp, G does not have access to it. It is not considered an asset to G. So G is still eligible under, well, in this case, Medicaid.

SPEAKER_01 40:22

Yep, exactly. And SSI. And and yeah, and SSI.

SPEAKER_00 40:25

And that's the thrust of how we put together special needs trust and why we put them together. And you really quickly brushed over this. You you you talked about your conversation with the other three kids, which is great. And you I think you mentioned I don't think this is a a real the real word. There's a non-legal document that you could write, uh, it's not binding, but let's call it a letter of intent for oh yeah.

SPEAKER_01 40:54

Love letters of intent.

SPEAKER_00 40:55

Yeah, and I think that this should be used all the time, all of us. Because

Discretion Protects Medicaid Eligibility

SPEAKER_00 41:01

legalese and and legal, he said, he said, she said, screws up the best laid plans of mice and men all the time. So if you have a letter of intent, that can go a long way to help the future people understand what the heck you meant when you wrote this crazy weird sentence. So, Beck, tell us what that is. What is a letter of intent and what does it do?

SPEAKER_01 41:24

So a letter of intent is is like I call it like like it's the letter of existential relief, you know, because the yeah, of course you call it that, right? Um, and so I have a I have a template for it that I I created like years and years ago. And what it what it does is it has it allows you to lay out like the information on your child, like who they are, like where they went to school, what anything that you think. And I use this template just as like to kind of get the get get it flowing in terms of what you, you know, what what you think somebody else who's stepping in to when you're no longer there to help them get a sense of who this individual is, what they've been through, and like what you what what you say that they value, you know, and what where like starting points are like you know, never went to church, hates church, like hates gospel music, like, you know, or you know, you but loves country music, you know, so like you can put in as much of that stuff as you want. And it allows you to put in like, you know, so my letter of intent is actually like you're gonna laugh, it's like a 10-page spreadsheet. And it has like 10-page spreadsheet. Yeah, because it has, because we've had so many medical issues and surgeries and stuff over the year that like I have it all broken down and who the providers are and stuff, and and like his family story and like you know, all these things so that when we go to the hospital or if somebody mean like and it has a link to a YouTube video so you see his baseline, like, you know, so that you know who he is, because if he's laying there sick, you don't know whether he can talk. He just looks like a very disabled individual, and you don't know that he can talk and walk and you know, and and you know, and sing cars and trains, right? And that he can sing songs and loves, you know, take this job and shove it, and you know, as a song and like all these inappropriate songs that he's been taught by his siblings, and you know, and so so you don't know that. And so this gives you a place to kind of like, and and why I say existential is because it goes back to what's the first thing we said is like what happens when I die? Well, it gives you a place to put this stuff down so you're like, okay, and and it's it's constantly it's constantly editable, right? It's not it's not fine.

SPEAKER_00 43:42

You know where this, you know where this needs to be, Beck. And I know I I know you took a look at this. This needs to be in this care navigator journal that we've been working on so hard and and trying to get so many people to to to use because it is so informative for people, not only in the time of crisis, but it's informative of people in the future to say, look, let's take a look at this whole person.

SPEAKER_02 44:06

Right.

SPEAKER_00 44:07

Let's look at the totality of the circumstances and the history is so vitally important. And yep.

SPEAKER_01 44:12

And where where I also think that's really helpful help helpful with mental health,

The Letter Of Intent That Guides

SPEAKER_01 44:16

too, is like, I also think like saying what drugs have been tried, like right there, like you know, here's all the meds that have been that been tried, and like like had a really bad you know reaction to Depacote. So do not use Depacote, like at all.

SPEAKER_00 44:32

How about just even a a care plan? We tried this process in 1987, right, and it didn't work, so don't try it again in 88, 89, and 90.

SPEAKER_01 44:43

You know, yeah, exactly.

SPEAKER_00 44:44

But I also thought that that the letter of intent was was meant to really clarify the legal document and what your intent was in terms of I, for instance, very often in wills, right? A last will and testament will say, I had actually had this this happen one time where a guy came in and said, Listen, I have three kids, I'm leaving everything to one kid, and he wanted it specifically in there. And I would have done this anyway. You put in there that I have three siblings here, uh three children. Here's their names, one, two, and three. And I am specifically excluding one and two from blah blah blah. And you know, so the intent is clear as to why or the fact that you are intentionally i.e. doing this, and here's why we're doing it this way.

SPEAKER_01 45:33

Yeah, I mean, that that is that that is a little bit different. I mean, that is definitely something you can do. You know, you'll often see that like letters of intent like to my trustee, like, you know, to that's what I was getting at.

SPEAKER_00 45:46

Yeah.

SPEAKER_01 45:46

Yeah, yeah. That is that is something like, you know, I would hope that you would use this. The I would hope that my future trustee would use this to make sure that G gets to see his siblings no matter where they are and they get to go on a, you know, G always loved to go on cruises and make sure that there is a family cruise that happens once a year. Or something like, you know, along those lines, like what the intention is to use the trust for that. You would hope that that like what we provided for him was respected, you know, down the road. If I'm not Here to make that decision and to bolster what my kids may ask for. Like, if my other kids are like, no, we always went on cruises, like, come on, trusty, like, let us use this for our for a cruise. You can rely on that letter of an of intent.

SPEAKER_00 46:25

What do you think about families who are not necessarily wealthy? What are some creative ways? I don't even, you know, the second-to-die life insurance you've mentioned a few times. Can they fund a trust that way?

unknown 46:37

Yeah.

SPEAKER_01 46:38

Second-to-die life insurance trusts are second-to-die life insurance is a great way of funding, funding an individual.

SPEAKER_00 46:45

So that's something that folks can look into. So I want to make sure that they, you know, we've we've got these things.

unknown 46:50

Yeah.

SPEAKER_00 46:54

This this second-to-die life insurance policy for the remote.

SPEAKER_01 46:57

And you know why you use second to die because they're cheaper. They're cheaper policies, because they're on two lives. So they're cheaper. Because two, you have to have two deaths before they pay out, as opposed to one death. So they're usually much cheaper than. Now, insurance after a certain point becomes cost prohibitive, regardless of what's second death or not. Yeah. But you know, if the parents are young enough, it's definitely something to look into. And the other thing, just a planning tool, you know, a lot of times families' wealth is like mostly in retirement accounts. And so one planning tool, because I don't know if you know of like the Secure Act, they they changed the Secure Act changed the way retirement benefits pay out. It used to get retirement benefits, used to get inherited retirement benefits used to get a stretch over the lifetime of beneficiary. And now they the secure act made it so that it gets paid out over 10 years. Well, that's a big tax impact because if you have to take, you know, say you have a $500,000 policy, you know, $500,000 retirement account and it has to get paid out over 10 years, that's $50,000 of income that you have to take each year. What happens with a special needs beneficiary? The one caveat to that secure act was it said that a special needs beneficiary, an eligible designated beneficiary who's a you know a disabled child, gets that stretch still. They're the only person that gets that stretch. So sometimes it makes sense to direct the direct the retirement account. You're like maximizing funds because you're you're getting a better, a better stretch, a better pay.

SPEAKER_00 48:31

Better bang for the buck as opposed to giving it to the kids who don't necessarily quote unquote need it.

SPEAKER_01 48:35

So yeah, so you may like say, okay, well, we have a house and we have a retirement benefit. Well, give the house to the kids, the other kids, and give the retirement benefit to the the beneficiary or equalize that way.

SPEAKER_00 48:47

That's interesting. Uh in fact, I know a family whose mom did that, and I always wondered why the hell she did that.

SPEAKER_01 48:54

Yep, that's I'm sure that's why.

SPEAKER_00 48:55

Exactly why.

SPEAKER_01 48:56

Yep, yep.

SPEAKER_00 48:57

Huh. Interesting. One last bit on the the family involvement and family as trustee and the kids as trustee. I I want to get your take on this because I know how I feel about it. Sometimes bringing in a professional fiduciary is a is just a necessary evil. Somebody who's out there who who is you know not doesn't have a dog in the fight, and because of boundary issues and everything else that we discussed, you want to bring in an independent third party. I've done that a lot for people, I still do. Yeah, so there is that. But many, many, many times family steps up and says, No, of course, I will, I will do this, I want to do this. My recommendation on this is in that we speak this loud and clear to everybody involved, and you could totally disagree with me.

SPEAKER_02 49:46

Okay.

SPEAKER_00 49:46

In fact, I almost hope you would because we can have a good debate about it. But

Funding A Trust With Real Assets

SPEAKER_00 49:51

I I really encourage people that if you're involved with this and and you're gonna do this work for your loved one, take a fee. Yeah, a fee to do it. Don't say, I'm gonna do this out of the goodness of my heart, blah, blah, blah, blah, blah.

SPEAKER_02 50:04

Yep.

SPEAKER_00 50:05

Don't get yourself into that boat. Don't put your siblings in that boat, don't put your parent, your your deceased parents or your your living loved one in that position. Take a fee because I say all the time, resentment. Once that seed of resentment is planted, it is impossible to kill off. So hard to do. And if you're doing it right, this is a thankless, thankless job. This is not a money-making scheme. No, take a fee. It could be one percent, it could be a flat fee, whatever you want, but make sure it makes you comfortable.

SPEAKER_01 50:42

Yeah.

SPEAKER_00 50:42

Take the fee, you're getting reimbursed for the work you're putting in.

SPEAKER_01 50:45

Totally. Yeah, absolutely. Uh uh, yeah, I a hundred percent agree with that. I I do. In fact, I have I have a situation where like they were my elderly neighbors, neighbors had a special needs child, and like they I'm a co-trustee with with one of the the children, you know, one of the other grown children. And she does like all of this work, like she does all of these things, like all of the stuff. And I always say to her, like, like, like, come up with a figure like that that is is fair to you, and like I will sign off on it.

SPEAKER_00 51:19

Like, because I'd give it I'd give that advice all the time. And here's I just gave that advice to a family member within the last three weeks, seriously.

SPEAKER_01 51:27

And here's the math on that. Here's how you how you say that. You say, if you didn't do it, you would be hiring somebody else to do it.

SPEAKER_00 51:34

So if you're gonna in this situation with your neighbor, I assume you're taking a fee.

SPEAKER_01 51:39

I'm not yeah, I mean, I take I take a very minimal fee because like she does all the work. Like we base I basically sign off on the tax returns, you know, like and so you know, and answer questions as they as they pop up that she may have about like benefits and things. And you know, and so so like it's de minimis. She does the the big lift. And you know what? If that facilitates, if giving her that that fee facilitates her not having stress when she goes and speaks to her sister or me facilitate her, like going and taking her out on a Saturday for you know ice cream because she's not worried about like finishing up that last project to get some overtime. Well, like I think that's a win across the board.

SPEAKER_00 52:21

Like, yeah, and so would her parents, by the way.

SPEAKER_01 52:23

Absolutely, absolutely. I guarantee like parents, I would never have a problem if my child was taking a trustee fee. Like, I would want you to, I would want you to, I'd want you to feel enriched, like across the board, and that you were not sacrificing going back to what they're thinking about.

SPEAKER_00 52:37

Sacrifice, don't get resentful, yeah.

SPEAKER_01 52:40

Right. Going back to that sacrifice and and resentment that that started when, you know, we couldn't go to Disney because he couldn't get on the plane, like, you know, because he was freaking out, or like, you know, we were planning to go to ice capades and you know, he ended up having to go to the emergency room because his shunt failed. Like, you know, it like all of these things that like that that that you have had to learn how to be flexible, you know, in response

Trustees Should Take A Fair Fee

SPEAKER_01 53:06

to circumstances that were far beyond your control.

SPEAKER_00 53:10

Or understanding in some cases.

SPEAKER_01 53:12

Right. Yeah. That this is this is a small way, and that you're still willing to take on this, like, is a small way to like to God bless you and hear you. Yeah, to say thank you. Like, yeah, no, I'm a I completely, I do not agree. And otherwise it's involuntary servitude, like, you know.

SPEAKER_00 53:30

Well, right, yeah. And and now I gotta do it because my parents are dead, and if we don't, they're gonna come and haunt me.

SPEAKER_01 53:35

And and that is a point that I try to impress upon families a lot, is just because they're a sibling does not mean that they are responsible. It does not equate, it is not equal. It's not equal. And as soon as you do that, particularly in the mental health world, as soon as you do that, you have now shifted the hierarchy and you have now changed it to a business relationship. So any chance that they had at staying friend, staying family and having like a normal sibling relationship, you have just killed it by by now making that that that special needs or that that individual with mental health issues now have to go ask for things or have to feel like he's in that person is in priority. So that boundary thing just becomes so I feel like anybody who has like a level of knowledge that I can't have or a different perspective on it is somebody that should be at the table to make their and many people do have different perspectives than a parent, right?

SPEAKER_00 54:29

Totally. Yeah.

SPEAKER_01 54:30

I see, I see, I see my baby, my baby, my baby, my baby. Yeah, you know, and and everybody else is a threat to my baby, you know.

SPEAKER_03 54:38

Yeah, yeah. You know, there's the mouth.

SPEAKER_01 54:40

I got it, I got him, I got him, I got him, I got him, you know. And that's you know, that's that's not legit, like that's not realistic, you know. Right.

SPEAKER_00 54:48

So now now a bigger and harder question. Well, maybe it's not that hard because I think you've already talked about it. If we're gonna give, in addition to the care navigator journal that that I think everybody should have that I developed, and I hope you guys will all get. What would be your starting number if they're trying to hold it together? They're trying to kind of hold it together. What would be the number one tool that you would tell them to to start with?

SPEAKER_01 55:18

So it depends on it depend like my lawyer answer, right? It depends. It depends, Michael.

SPEAKER_03 55:24

Yeah.

SPEAKER_01 55:25

It depends. I think I think the holding it together, like that there's so many different things that you're holding together, obviously. Like that's why, that's why I love I love the the the imagery because I'm like, yep, it's like a cup and it's like so many things that is like taped together and like you're doing your best. I mean, so I think I I do think like the letter of intent is is a nice way to start because I do think it helps you kind of like like offload some of that and it feels like you're actively doing something, much like I think you are you are the the your tool, your tool does.

SPEAKER_00 55:58

I like the idea of the you know the the letter of intent from the way that you described it and how you envision it because it does get you thinking about it, it gets people in that mindset, which is half the battle. Yeah and and and I figured that that was going to have to, you know, I had no idea what the answer would be. I didn't really have an answer for that question when we started, but as we've been talking, I I think it just makes a lot of sense to to to to get to get introspective and thoughtful and planful and proactive about all of this. Back to that word, which may have been the very first word we used in this whole conversation.

SPEAKER_01 56:30

So yeah, definitely proactive is better and and demystifying death. We all die and we never know when it's gonna happen. And so, like, why why run from it? We don't have to live in this morbid, you know, fascination that I might die when I go get in my car. But like, you know, but living in this idea that, like, you know, I'm gonna keep doing these little clicks, and as I do these clicks, I'm just building this, this, this better plan and that can be tweaked, and I'm keeping it flexible and responsive enough to to all the things. And the other thing I was gonna say about that letter of intent is nice because it also allows you to put down phone numbers of people. So, like, oh, who is that? You know, who is that guy at that guardian place that like mom always throw a picture, throw a picture in there.

SPEAKER_00 57:16

You know, I thought about this the other day. I can't remember the name of that doctor, but if you show me a picture, I was like, that's the one.

SPEAKER_01 57:21

That's yeah, totally, totally. It allows you to just put that's why I do the baseline image, you know, so that you know what he looks like when he's up and well. So now you automatically, I don't have to describe it for you when we're in crisis and I'm watching you roll him down to get a CAT scan as he's vomiting because his shunt is failing. Like, you know, you can go, you can click on your phone as we're we're rolling down and you can see what he looks like. Oh, okay, he's way beyond his baseline. Like, you know, he's not only does he have an IQ of 54, but now you know, now you know what that how that IQ of 54 manifests, you know, what he looks like when he's when he's well, you know, and that's that's all like so, so relevant to the next gen of people who are going to take care of him.

SPEAKER_00 58:03

And it's, I mean, just as a final thought, and again, as always, thank you so much for your insight and the conversation. I love our conversations, but it's humanizing, right? It's putting a human back into what a piece of paper or a person laying on a bed. And and and your your your insight and your expertise and your experience in all this is so valuable. And I hope so many people out there got it got a lot out of this. I learned. Thanks again, Beck.

SPEAKER_01 58:33

My pleasure, Michael. I think it's great that you're doing, and I love your logo. So you need to now now you need to get me a sweatshirt or something. That's it.

SPEAKER_00 58:42

Yeah, well, we're gonna get you the logo to go behind you because you're gonna be involved in a lot more of these podcasts.

SPEAKER_01 58:46

Let's do it. Let's do it. I'll do it, I'll do my logo instead of my Dave Hitney uh blanket.

SPEAKER_00 58:51

Yeah, yeah, yeah.

unknown 58:53

All right.

SPEAKER_00 58:57

Okay, as we sign off today, I want to give you a couple of uh seconds here. Just take a deep

Perfection Versus Protection And Homework

SPEAKER_00 59:03

breath and breathe it in and breathe it out. There's a lot to this stuff. We've covered a lot, we've talked about trusts, we talked about taxes, we talked about the what-ifs that usually make us wanna, you know, change the channel or go running like your hair is on fire. If your head's spinning, it's okay. That's actually a sign that you care deeply about the the issues that we're talking about and the legacy that you want to build. So here's the truth. And this is true for so many of us and so many different things that we try to do. Perfection is the enemy of protecting. You don't need to have a hundred-page legal binder finalized by tomorrow morning to be doing a good job with this. Sometimes holding it together just means writing down that first line, that first list of names, the people that you trust, the doctors who know your routine or your loved ones' routine, friends who understand the why behind the what. Planning isn't about predicting every single hurdle, even though we try to. It's about building a foundation so that when the hurdles come up, the person you love has a power uh you know a place to stand. And that house of cards that we talked about isn't collapsing down around them. You're gonna do the hard work of love right now. Even in the quiet, boring, administrative parts of caregiving. And yes, they are quiet and they are boring, and there's administrative work to be done. So, what's your homework for this week? Don't try to solve 30 years in one week, one day, one hour. Just have one conversation. Call up a professional, text another parent that you know, just sit down with a yellow legal pad and write down step one at the top. Start writing down people that you trust and that you know and and love. You've got this. And even if you feel like you only kinda have it, you're still doing enough. I'm Michael Macnack and I want to thank you for joining me on holding it together, kinda. And we'll talk again soon.