Meghan Smallwood: 0:00

Welcome, this is the Post Secondary Transition Conversation. We focus on the ins and outs and everything in between of the transition process for families of students with disabilities, I am one of the hosts, my name is Meghan Smallwood, and I am a public school transition coordinator. As always, I have a co-host...

Patrick Cadigan: 0:18

My name is Patrick Cadigan. I am also a public school transition coordinator. All right, and we are back. So Meghan and I were talking offline, and for long time, listeners who have been paying attention Meghan has been engaging in some... I'm blanking...

Meghan Smallwood: 0:40

Like, what am I...

Patrick Cadigan: 0:41

Like, online...online

Meghan Smallwood: 0:42

...webinar?

Patrick Cadigan: 0:43

Online webinars. Thank you. man.

Meghan Smallwood: 0:45

Yeah.

Patrick Cadigan: 0:46

...totally blanking. All right. Meghan has been engaging in some online webinars for families about various topics. And as we were talking about it for our discussion for tonight, she was like, "Well, hey, wait a second." You know, all of this stuff has been coming up, and in some cases, even very specific questions from parents, and maybe it would be a good idea to share out about some of the things that she's been hearing. Now, keep in mind that we might be jumping around just a little bit, but again, these are on topic conversations that are coming up all the time. So, you know, we thought we would address that. So let's see. Meghan threw together some notes, that I'm just now seeing, so I am looking them over and the overarching discussion, special needs planning for the future. So along those lines, we could be talking about medical treatments, social psychological support, education, housing, things like that. So Meghan, one of the first notes that you had thrown out there is a will setting up for the future. Do you want to talk about that, what were you hearing?

Meghan Smallwood: 2:03

Yeah, and as I'm writing this, I'm like, Hmm, this should be on my spring break to do list in a week, because I need to update mine. And my parents recently updated theirs, which I was very proud of them. Because when you have a child or a young adult with special needs. It's something you definitely need to revisit periodically, because things change, and you just want to make sure you have the most updated information left. God forbid you weren't there anymore. You definitely want to go to a special needs attorney, someone who's familiar with all the logistics that go into it. And when you're doing this, you want to think of it as a way to put in there if someone was to pick up the pieces because you left, you know, envision it like you're going away for the weekend, except maybe longer, and someone has to take over and come into your house and come into your life. And you want them to know where everything is and what everything means that's that's what your will is going to do. It's also going to determine, like, who's going to get what, what beneficiaries you have. And we'll get a little more into, you know, beneficiaries that how that has to relate to your individual with a special need. But it's going to go over all of your stuff and stuff that you might not even be thinking about, that you're like, Oh yeah, that does have to end up somewhere, you know, properties, your assets, even the personal things, they all get determined through your will. So you want the names also, if you have guardianship over your young adult with disability, you want a name in that will who becomes guardian of your dependence, so that if you're not there anymore, this person, and they should know ahead of time, is going to step in and take over all the daily things for them.

Patrick Cadigan: 3:52

One thing that I will throw out there, it's funny that this topic comes up now, because this is something that my wife and I have had to do. My wife has been talking about it for the longest time.

Meghan Smallwood: 4:02

See, see.

Patrick Cadigan: 4:03

Yeah, just getting our I mean, we, we have two neurotypical children, and already the process is a little bit of a challenge. One thing that I will throw out based on experience, because we had to sit on a Zoom meeting for an hour with an attorney like Meghan was saying there is a lot to it, because at least in our case, it was like, Okay, well, you know, who are the assets going to go to? Okay, I need that person's name. If it doesn't work out with that person, then who is the next person? If something happens to that person, it was incredible.

Meghan Smallwood: 4:34

Yeah, and so you can only imagine, when you've got guardianship over someone, or, you know, you've got someone who's completely dependent on you, how that really factors into it. So that's why I reiterate, a special needs attorney is really someone that you need to go to, but that, you know, just back to my parents, they they were great when they lived in New York. They had the will made. But then, you know, life happens and you forget to update it, like simple little things like, oh yeah, we moved to a different. State, I guess we should update it with our current address, or, oh, yeah, my daughter got married. Maybe I should have her name changed in there. So those little things, it's just really good. Maybe set a date each year that you know, you revisit it, and it doesn't have to be with the attorney, but at least you and your your spouse go through it just to make sure there's nothing else you want to add in there. There's no other information that came up that year that has to be included.

Patrick Cadigan: 5:25

One other thing that I will throw out there, and this makes me think of a conversation that Meghan and I have already had in the past. When doing something like this, it does make you think about uncomfortable things and things that you may or may not already have thought about, and it does lead to what I would consider to be a fairly realistic conversation about who we are, where we're at right now, but then again, What we're thinking about in the future. And again, just based on some, you know, what we know about, some of the families that we work with, that can be scary and that can be very, very difficult.

Meghan Smallwood: 6:12

Yeah, it definitely can be uncomfortable. And you know, one thing you know, in the webinars that we've had and the conversations that we've had, you know, it here comes up a lot. Oh, well, their siblings are going to jump in and help. I think that's a big assumption. And of course, we I'm a sibling, and I've talked to many siblings who are like, of course, I'll help take care of my sibling. But, you know, they get into their own lives. They get their own families, you you know, and the day to day things they might not know, everything that goes in, and also financially. They might not know all that goes into taking care of their sibling, but it that's why these conversations really should happen, and it is uncomfortable, like Patrick said, you know it's it's hard to sit down and try to plan out what life is going to be like when you're not there anymore, but if you're proactive about it, then you know that things will go a lot smoothly for your family when you're not there.

Patrick Cadigan: 7:04

On the next note, what I'm seeing, and this is a topic that, needless to say, has come up more than a few times and again, Meghan, I know that you did a webinar recently specifically about this topic, which is supplemental security income or SSI, so where are we at with that right now?

Meghan Smallwood: 7:21

Oh, such a popular topic and such a hot topic for so many we get a lot of questions about SSI, understandably so, because there's not like one person you can call up from Social Security to be like, Hey, will you answer all my questions? You know, they're not going to walk you through it. You kind of got to figure it out yourself. So this is one of those topics that encourage families to research well before they apply at 18. Remember, you can't do anything until they turn 18 for SSI based on their individual disability. But it just, I think one of the biggest takeaways that parents need to remember is that SSI is means tested, and it's different than SSDI. So for SSI, it's for those individuals will never be able to work full time, or even if they are able to work, they're not able to work above poverty level. So the the idea for SSI is that the money will help to pay for their basic food and shelter. Okay, makes sense. SSDI is it somebody who was working but can no longer work because of an injury or disability that happened while they were working? Now, I've heard from families, as they're getting older, and they themselves are retiring or eligible for SSDI. They ask about if their child could receive SSDI because they were tired or parent passed away? And the answer is yes, and that is something that you can definitely look into. They don't have to remain on SSI just because they have a disability. If they are on SSDI, they're considered a disabled adult child, and they could be switched over to that based on the parent. And the reason that many opt to do that, or it's good idea to do that is because when they switch over to SSDI, they would receive more, possibly 50% more than they would on SSI. So if you are approaching retirement age, you're starting to think about those kinds of things. That is definitely something to think about. And you get the joys of reaching back out to Social Security again to see how that works. But all in all, it is something to consider.

Patrick Cadigan: 9:23

And then, what about families who have their young adults who are working? Is there anything that we could share out about that?

Meghan Smallwood: 9:32

Yeah, and it does get very complex, and I'm not gonna lie, my head starts to spin when we hear these webinars about the quarters of income, and, you know, amount of time they work and how it all goes towards, you know, the long, the big picture of everything. But basically, when they are working and earning some income, they are earning quarters that can be switched over so they could have an SSI SSDI combo. But I will just remind you that if you are connected with DORS. Even if you're not, there's benefits counselors out there and available to help you sort through all that, because they can help make sure that your child or young adult is able to stay within the limit that they need in their accounts to receive SSI, which is $2,000 and it's not impacted. But they still work because, of course, we want them to work

Patrick Cadigan: 10:22

Long time listeners will remember that we talked with Pam Paris, and we recently caught up with Pam at a meeting. She came and she talked to a group of other transition coordinators, and she shared out that she was having some challenges with SSI and that she was working to fix that. So it's, it's definitely a real thing.

Meghan Smallwood: 10:43

Yeah, and actually, I'm glad you mentioned Pam, because one thing that came up that I looked into for her, because her son is working and doing so well, she was like, honestly, I don't think he needs SSI. She was like, What are the benefits if it's going to cause me more headaches? And the one concern we did have was, how would it impact his Medicaid if he was not well, I guess, because he's found eligible, but he decided not to take it. Would the fact that he wasn't receiving SSI impact his Medicaid, which would ultimately impact services for DDA. So I dug a little deeper, and I didn't get a straight answer, but basically, if he was to meet the requirements for Medicaid solely, you know, not based on SSI, then he could remain with Medicaid. So it is possible. Just got to do your research and make sure it aligns. But again, SSI, they're they're entitled to it, so I wouldn't give up on it. I would just say, work with the benefits counselor and do some research, talk to people in the field and see what you can come up with.

Patrick Cadigan: 11:42

For me, one of the things that I appreciated was the fact that just because we're transition coordinators or even special educators doesn't necessarily mean we know everything. I really appreciated Pam's take on things like, she always just kind of walks in and was like, you know, I don't know everything. I'm just, you know, doing what I can, flying by the seat of my pants in some cases... And I remember, in the course of the conversation with all these other transition coordinators around we threw out ABLE account. She didn't know anything about ABLE account, but boy, she learned right away. So, I mean, again...

Meghan Smallwood: 12:18

And she acted on it.

Patrick Cadigan: 12:19

Yeah, it's just again, it's amazing how there are resources that are out there. It you may or may not be aware of them, but it's always good to keep your ears open and and your eyes looking.

Meghan Smallwood: 12:32

Right. You don't know what you don't know. And that's why anytime I come across a question from a parent, and I'm like, honestly, I'm not sure, but I'm gonna go and find out, because I would love to thank it for someone else who might have the same question down the road. Which leads me to a next point that I heard this week that I was fascinated by and I tried to research a bit, but I couldn't find anything. But it did come from good source. I heard that in New Jersey, they recently passed an amendment that individuals with severe autism, could apply early for SSI, and now they weren't sure if it was six weeks or six months, but you know, we had a discussion about applying for SSI and how important it is to wait until after 18, because they want to look at the young adults assets as a separate from the family. But that was an interesting amendment for New Jersey, so I don't know if it's leading the way for other states, but I was just interested and wanted to share that little tidbit.

Patrick Cadigan: 13:25

Yeah, I'd be curious about the backstory of that, like, why? What happened that made them make the change...

Meghan Smallwood: 13:32

Yeah, usually when something occurs, an amendment like that, it's because of a case. And I know we do have a friend in New Jersey that we've spoken to before, so maybe she might have some more information on that.

Patrick Cadigan: 13:43

So we're going to jump in and we're going to change lanes now. We're going to go into special needs trusts. Again, it always seems like there's a lot of discussion around the financial pieces of the things that we have to talk about. But in your in your webinar journey over the last couple of weeks, what did you come across with special needs trusts?

Meghan Smallwood: 14:05

Yeah, you know, I always get the question from parents, well, what's the difference between a special needs trust and ABLE account? And really, special unique needs trusts is unique and different from other trusts, and granted ABLE accounts and the special needs trust kind of act similar, and it's not bad to have both. You know, you can have both, but for a special needs trust, you know, it's the idea is that it's not going to pay for those basic food and shelter needs. That's why an individual is receiving SSI. It's also not supposed to be used to pay for programs that could be paid for by Medicaid. It's supposed to be paid for anything that relates to the individual and benefits the individual. So that could be vacations, that could be anything that pertains to family members that's going to ultimately benefit the individual. So, for example, I think in my the webinar I attended, they threw out, you know, family. Family that lives across the country is coming to visit and stay with the individual for a couple days. They could potentially help pay for the plane ticket for that so, you know, you can get creative and think outside the box. A parent did ask, what was the difference between first person and third person? Special Needs Trust, which I wasn't even aware of, the different levels of the trust, but again, that's why those special needs attorneys are very resourceful and knowledgeable and can help you out. But they it was phrased that you would want a third party special needs trust, because that's when the parents would be the ones funding the trust with the assets. You know, they are the ones overseeing the money a first person special needs trust is because the assets had been in the child's name. So I've had students actually, where there was maybe a malpractice lawsuit that they were awarded money from. That would be a case where the special needs trust for would be first person, because the money was in the name of the child. So the assets, though, in a third party special needs trust is beneficial because the government will not get it. If you someone was passed away a you would decide in your will where it's going to go. So it's protected. And I think that's the most important thing about a special needs trust and even an ABLE account, it's protected. You know, you can't be touched by the government.

Patrick Cadigan: 16:23

I need a visual.

Meghan Smallwood: 16:25

I'll work on that for you.

Patrick Cadigan: 16:26

This, I have to admit that a lot of times when we are talking about the financial pieces, my brain tends to, tends to glaze over.

Meghan Smallwood: 16:36

Well, and I hear you because I am not an attorney. I am not someone from Social Security, so when I hear them in their world, just like someone probably hears us a lot of times in our world of special education and transition, I start hearing Charlie Brown's teacher like want. So that's why my notes I'm like, All right, I got to break this down. The examples help you know I need to understand so I can share with families, because this is information they need to understand. Need to understand. But those kinds of things stood out to me, the fact that it's protected, that it's in, the parents are the ones, you know, funneling the money in. Those are the important things. But something else that came up from a parent as they were talking and asking about when they were planning for future, the future with their beneficiaries, they had their special needs, adult child listed as their primary beneficiary on their life insurance and their annuities, and she wanted to know if it was better to change that. And they answered that with an astounding Yes, you do not want your individual with special needs to be your beneficiary. And that was one thing that was pointed out. Like, if that's the case, you need to go in tomorrow and you need to change that, because that's going to impact them. God forbid something happened to you that will impact them greatly. All of a sudden, they've inherited all this stuff for a neurotypical individual. Like, yeah, great, they can figure it out. But in this case, it's more harm than good. They mentioned that you would name it to the special needs trust and not the individual. Interesting, I know I was like, "Huh, that's something I wouldn't have thought about." And it's not like out of malicious intent, like you think you're naming your individual with special needs to protect them, to help them out. But ultimately it's it's not if they are going to be your beneficiary of everything.

Patrick Cadigan: 18:37

From that part of the conversation, I imagine that, then that segues into a little bit more information about an ABLE account. Am I correct?

Meghan Smallwood: 18:46

Right, and I mean, the there's like I said before, families have said, well, I've got a special needs account. Do I need your special needs trust? Do I need an ABLE account? And in reality, yes, it's beneficial. You can kind of think of it like having a checking and a savings account. They have different benefits and different purposes. I know we spoke with Kelly Nelson, and she went into depth about the ABLE accounts and the uses and how to access it so they both have their benefits. I wouldn't shy away from it just because you have one. I think it's just good to have in place in general. So I think also, you know, one thing that they mentioned, like, you know, if you have your young adult as your beneficiary at the moment, and you want to change it, but you don't have a trust, you know you can name another family member until a trust is put in place. But you know in the meantime, like if you had an ABLE account, at least, you know you have that option for other things as well. So it's not just laying in limbo.

Patrick Cadigan: 19:48

You brought up Kelly Nelson when we were talking with her, we were talking offline, and one of the things that we asked her about was to have a long form discussion about the difference between the special needs trust and the ABLE account, and she said she was interested. So I look forward to the future when we can catch up with her and have that conversation. Because, again, just finances glaze over. I don't get it.

Meghan Smallwood: 20:14

Yeah, I think that would be a great conversation to kind of lay it out for everybody. I think there's also, there's hesitation from families, there's fear to go to an attorney. I think it's scary. It can be pricey. So I think the more they can hear on their own and kind of take their time to do the research, the more we help them out, because if they do go to an attorney, then they can go and know what they're talking about and what they want.

Patrick Cadigan: 20:40

It's funny how, again, we talk about changing lanes, but, you know, just in general, like, I remember when we had our conversation about guardianship and all of the different feedback that, just for myself, that I have heard in some of the Facebook groups that we belong to. Like, you know, when a parent throws out, okay, I'm thinking about getting guardianship, and one parent's like, oh, it's no big deal. You just, you can do it yourself. Go here, and then you have another family who's like, What are you talking about? Like, it's crazy expensive, and you have to go here and do that. I mean, it's just it, you know, in some cases it can kind of all become a jumble, or, you know, it also tends to kind of mix and mash together, and sometimes it's really easy to get confused.

Meghan Smallwood: 21:22

Yeah, it makes my head spin so I can understand.

Patrick Cadigan: 21:28

Well, good that I'm not the only one, because, yeah...

Meghan Smallwood: 21:30

You are not alone in that.

Patrick Cadigan: 21:31

Yeah, I was, I was feeling the pressure. I have no way of transitioning to this. So I'm just going to be very direct and throw it out there that in the notes that we have for our conversation today, there is a mention of letter of intent. And...

Meghan Smallwood: 21:47

Yes.

Patrick Cadigan: 21:47

...so how does that apply to what we're talking about?

Meghan Smallwood: 21:51

Yeah, and it's it's funny, because I've worked on a format of this with some fellow members of our Transition Commission for our county, because this came up a few years ago when we were, like, really encouraging families to plan for the future. But we, jokingly, we called it, what happens when I move when I moved to Florida, you know, like, instead of what happens when I'm not there, because the parents didn't want to think about, you know, what happens when they're not there. But anyway, that is the letter of intent, the legal document that's like the playbook. I always relate it back to. You know, when you have a babysitter for your children and you leave the list on the fridge, and it's got all the important contacts and doctors names and medicines and all that stuff, it's kind of like that, what everyone involved with your loved one needs to know, what they can pick up when they walk in that house and be able to navigate through life for that individual, it isn't a legal document, but I've been told it's stood up in court with a trust or a will as well. It is going to outline all you need to know about the individual, not just that important information about doctors they go to, providers that they might be working with, or coordinators, but also, what do they like or love? What do they not love? Where do they like to go? What are the views or who are their friends? First and foremost, what their contact information, if they're, you know, higher functioning, what are the views on marriage? Maybe for them, what religion are they? Where do they go to church? You know, all these things that you would need to know, the ins and outs of it could be a handwritten note. If you have someone who's more medically involved and you want to make a video about it. It could be a video, you know, whatever works for you and your loved one. But the point is, all the information that would need to be in one spot for somebody is there.

Patrick Cadigan: 23:56

That is good advice, but also a good place to stop. I think that a lot of this is really valuable. And do you have more webinars coming up? I imagine you probably do.

Meghan Smallwood: 24:10

We have one with Kelly Nelson.

Patrick Cadigan: 24:13

Good deal.

Meghan Smallwood: 24:14

I know. I'll have to ask her about, you know, the comparison we talked about with ABLE accounts and special needs trusts. I think that would definitely be beneficial, not only for families, but for you and me.

Patrick Cadigan: 24:27

Well, one thing I definitely need you to do, same thing that I'm going to ask our longtime listeners to do, is completely ignore the fact that I have not been to any of these webinars like I said that I was going to try to do in our last discussion when these long term webinars came up, because I am in the throes of soccer season with my son, who's on a new team. And yeah, we're still, we're still finding our way.

Meghan Smallwood: 24:52

Well, the good news is there's always next

Patrick Cadigan: 24:54

There's always... year. Because we do them every year. Yep. all right. Well, with that being said. Said we have a lot more great conversations coming up, so please come back in two weeks time and join us, and we will talk to you soon.

Meghan Smallwood: 25:08

Thanks everyone.

Patrick Cadigan: 25:18

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