Planning for Tomorrow, Grace for Today: A Conversation on Guardianship & Estate Planning with Shannon Laymon-Pecoraro

In this episode, Valerie chats with Shannon Laymon-Pecoraro, a certified elder law attorney, founder of East Coast Elder Law, and a nationally recognized voice in special needs planning. Shannon not only brings deep expertise in guardianship and estate planning but also shares her own journey as a special needs mom.

Shannon brings to her practice an exceptional legal skill, and a deep personal commitment to serving the community. Shannon is a recognized authority in her field frequently sharing her knowledge as a lecturer, both locally and nationally. She has delivered multiple presentations at Stetson University School of Law's prestigious Special Needs Trust Conference and is a professor for their tax certification program.

Together, Valerie and Shannon discuss:

• Shannon’s personal story of navigating her daughter’s diagnosis and the challenges of advocating for school supports.
• How early experiences volunteering at a camp for children with disabilities shaped Shannon’s career path.
• The realities of guardianship—why it’s required, how the process differs by state, and what parents need to know as their child approaches adulthood.
• The importance of estate planning and common mistakes families make when planning for their child’s future care.
• Why giving ourselves grace as parents matters when navigating late diagnoses and the day-to-day challenges of raising children with disabilities.

This conversation offers guidance for families thinking ahead about guardianship, special needs trusts, and transition planning—while reminding us of the empathy and patience we need to grow along the way.

Key Takeaways:

• Girls are often misdiagnosed or underdiagnosed with ADHD or autism; deeper evaluations may be needed.
• 504 plans can make a powerful difference in school success—even without a formal ADHD or autism label.
• Guardianship laws vary by region but share one truth: at 18, your child is legally considered an adult. Preparing early helps avoid gaps.
• Estate planning is essential—avoid disinheriting your child or relying solely on siblings to manage care. Special Needs Trusts exist to protect both assets and benefits.
• Parents must remember to give themselves grace—we don’t miss things out of neglect, but because we are often just trying to get through the day.

Connect with: Shannon Laymon-Pecoraro

https://www.facebook.com/EastCoastElderLawPLLC https://www.instagram.com/eastcoastelderlaw/ https://www.linkedin.com/company/east-coast-elder-law-pllc https://www.linkedin.com/in/shannon-laymon-pecoraro-cela-6271bb139/

https://www.eastcoast-elderlaw.com

Connect with me:

info@foreverhomeconsulting.ca

Music Acknowledgement: Audio Coffee - Denys Kyshchuk

Editor: Scott Arbeau

Link for book: The S.H.I.N.E. Principle: The special needs mom's path to strength, hope and happiness by Valerie Arbeau

https://www.amazon.ca/dp/B0CW18ZXGX (Canada)

https://a.co/d/03hFdZI4 (United States)

Learn more about your host at:
https://coachingwithvalerieanne.com/

Transcript

And so I still have clients who are in their 90s, which means their kids are 50, 60, but their kids are at home, you know, in any day at this point, you know, in their 90’s, it could be their last day here. I mean, it's the same with all of us, but as we're hitting that age, right? And so, I talked to them about transition planning, you know, what's the plan when you're not here?

Valerie

Hello and welcome to the show. I'm so glad you're here. I'm Valerie, mom to two with disabilities, one visible, one invisible. Today, I will be chatting with a certified elder law attorney who also specializes in special needs planning. Shannon Layman-Pecorrero has established herself as a preeminent voice in elder law and special needs planning. As the founder of East Coast Elder Law, Shannon brings not only exceptional legal skill, but also a deeply personal commitment to serving the community. A recognized authority in her field, Shannon frequently shares her knowledge as a lecturer, both locally and nationally. She has delivered multiple presentations at Stetson University School of Law's prestigious Special Needs Trust Conference and is a professor for their tax certification program.

Valerie

All right, so welcome, Shannon. 

Shannon

Thank you for having me. 

Valerie

You're so welcome. I'm so glad that you're here. So Shannon, tell us a little about your special needs mom journey.

Shannon

So I waited to have kids a little bit later in life. As a lawyer, we kind of focus on school and gettin through that. And so in 2015, I had a set of twins. And early on, I could notice that one of them was a little bit different than the other one, right? And I think it's a little bit easier to compare because they're same ages. They should be modeling very similar development skills.

Shannon

And then finally, in kindergarten is when we started to notice like she really didn't want to pay much attention in school, very hyperactive. I used to say very boy like, you know, and for girls that hyperactivity isn't noticed as much as what it is in boys. And so finally, in first grade, whenever we got them out of the private school system, because during the COVID pandemic, we put them in a private school. So that way they could have a typical educational setting, as opposed to trying to do remote learning because I could not teach kindergarteners. I can, I can teach lawyers, I can teach, you know, college kids, but I could not teach reading and writing for sure. And so in first grade is when we sat down with the teachers. And, you know, at that point in time, we kind of realize that there's something going on, right? And obviously with my being heavily embedded with the autism society and other local organizations, we had one of them tested and was diagnosed with executive functioning disorder at the time. At this stage, they're not necessarily ready to throw a label on her. 

Valerie

Okay. 

Shannon

But we have noticed that there are, you know, differences. She's very academically smart, a little bit academically lazy in terms of like, she would turn in her work and just not like finish it. She'd be like, all right, answer the questions. I'm done. I don't need to do the rest of this, whatever. And so the doctor has indicated that she could go either way later testing and we will at some point in time, probably go through the Vanderbilt program to determine what she has, but with girls, you know, it's very common to misdiagnose autism, ADHD, or an anxiety disorder. And so we're not really quite sure what that's going to lead to, but that's where we're at in life. And she has a 504 in school that I had to actively fight for the school district did not want to give her one without either an ADHD or an autism diagnosis. And so, finally, I told him that wasn't an excuse anymore that she does have a diagnosis, it's executive functioning disorder and that even without a diagnosis, they still have to do the rating skills. So now she's doing very well in school and the teachers have to make sure that she is going back and reviewing her work. And so now we've gone through a B/C student up to an A/B student as a result of a 504. So….

Valerie

Wow. All right. So you mentioned a Vanderbilt program. So, could you explain to us what that is?

Shannon

So, there are certain colleges that have some in-depth programs to be able to test in particular for autism in females. And one of my really good friends, a guy named Jim McCartin out of Georgia, he's another special needs planning attorney. We're both members of what's called the Special Needs Alliance here in the States. And he has a daughter with autism, and he is the one who let me know that Vanderbilt University has a program, I believe Yale has a program and Stanford has a program. You know, it takes a while to get in. I historically was of the mindset that as long as she was getting the services that she needed and that she was matriculating, okay, the label itself didn't really matter to me. Just because I don't necessarily always love the labels, even if I'm working with clients, I normally tell them like, tell me about your kid. Like, yeah, the diagnosis is important. But at the same time, like their hopes, dreams, what they can accomplish, that's what's really important, right? And so Jim is the one who let me know about the different programs that provide much more in-depth testing, much more reliable. And basically, it was like, you know, for the benefit of her, you really need to get her the diagnosis, it is important for her long term. We will move in that direction at some point. 

Valerie

Okay. All right. Well, thank you so much for sharing about that, because I didn't know that. First of all, I don't live in the States, but it's really cool to know that there are certain programs out there where we can get more in-depth. And I'm assuming as they give you the in-depth, is there a part of that sort of strategies that they will give you just to help you navigate life for your child?

Shannon

Yes. And even, you know, some of the behavioral therapists, some of the, the doctor that gave Ainsley her diagnosis, he actually had given us some recommendations on how to get her to like refocus and retrain. You know, she's very visually motivated or like very reward driven. And so we had developed like a system with the teacher - TREAT. And so we had developed these like felt stick on labels for her desk that she could attach. And so when she had a really good day, she did all of her work, whatever, she would be able to spell out TREAT. And once she spelled out TREAT, then she would get to pick something that we would do with her. So whether or not we would go to the movies, go to, she likes to play video games and stuff like that. So whether or not like go into the arcade or whatever that might be. And so in first and second grade, that was actually how we did it. So she could visually see that reward. And then we've now moved on to much more of an intrinsic reward system. Because you know, in life, we do not get visual rewards. So I wanted to like, let her know like, this isn't going to be something lifelong, but it's something that helped motivate her. But that was at the recommendation of the doctor.

Valerie

Wow, cool. All right. I love that. I love that spell out TREAT. And yes, I have a child with autism, which came later, we got that diagnosis when they were probably about 15, 16. And then we had had the ADHD diagnosis at the end of grade five, I believe. So…

Shannon

Females, I mean, we have that, which is why I've not been in a rush to get the diagnosis, because that, that diagnosis of ADHD versus autism, there was a study actually down at UNC that discussed the misdiagnosis in particular of females. And, you know, obviously, at fifth grade, we were still identifying as a female at that point in time. But for me, that's not uncommon to hear we had the ADHD at fifth grade. And then we moved into a different diagnosis because I see it all the time in females. So that's great to hear that that journey though for you. So you have the one with autism.

Valerie

Yes. Well, actually, both of them have autism. The oldest, Melody-Anne, she was born with a prolapse cord. So has CP, or cerebral palsy, and very involved. So she's total care. And then the diagnosis for autism came later because we didn't realize it wasn't until a speech language pathologist came working with her and said, "Have you ever thought about Melody-Anne being on the spectrum?" I'm more like, "No." But then it made sense because when we look back at her development, she didn't want to smile. She didn't want to look at us. She wouldn't look at herself in the mirror. Yet she learned all her concrete stuff really quickly. She learned her numbers, her colors. And even though she couldn't communicate verbally to us, she could let us know in other ways that purple was purple and yellow was yellow. And she understood the numbers. So it was just interesting that the diagnosis came later. We didn't even think of it. I had no idea that you could have a dual diagnosis. We were just dealing with cerebral palsy.

And so it wasn't really a biggest surprise with our youngest when we got that diagnosis. Because again, when we look back, we remembered the flapping of the hands, didn't really want to hang out with her peers, wanted to be more with the adults, and enjoyed being on their own. So other little things as well came up as we started to look back. How did we miss that?

Shannon

Well, as parents, we're just trying to get through the day, right?

Well, especially when you have one child that already has a physical disability, you kind of focus on that. And once again, most of my families always say they're just trying to get through the day-to-day. And we start talking about the legal aspects and compound that onto, you know, what I do onto everything else that they're just trying to go through. It can be overwhelming. And so I think some of the non-visible disabilities, we love our kids for who they are, regardless of, you know, what it is and how much they may drive us crazy at given points in time. But it's probably harder to just recognize because of where we're at at that phase of our lives. And if you're already dealing with a physical disability, it's completely understandable.

Valerie

Well, thank you. And I do have to give myself grace. It took me a while to actually give myself grace. My husband and I are like, how do we miss it? How do we miss it? But as you say, and with Melody-Anne being total care and us having to do everything for her, and the youngest was just seeming to do really well. Very smart. Very smart. Started reading at the age of three and just picked up things so quickly. So it wasn't very obvious. And it wasn't until I started realizing they're not responding to discipline. They're not necessarily following direction. They are very messy. You could tell where they sat at the table. 

Shannon

Well, that's easy to say too. Like, isn't that a normal child thing? Like just like a neurotypical child can also make a mess. Like these are not like things that it's not until later. It's like, oh, this makes sense. You can go back and look at it because my child that does not have a diagnosis is messier than the other one. Her room is a constant disaster. And I'm like, Addison, how did you get spaghetti on the counter?

Where did this happen from? So, you know, it's a very, very, very, very difficult time. It's easy to overlook those little details.

Valerie

Absolutely. Absolutely. So yes, giving ourselves grace. All right, Shannon, I happen to know that in your high school years, you volunteered. So tell us about this because this is something that kind of helped shape your career and your passion for helping others.

Shannon

Yeah. So in high school, I originally lived in Guam and then I moved back to New Jersey. And while I was there over the summers, I would go home to Delaware, which is where I was born and raised. As a military kid, I kind of, you know, moved all over the place. But Delaware is to this day still home in terms of that was where I was born. That's where I spent most of my, you know, younger childhood years.

So in the summer, they had a camp through United Cerebral Palsy of Delaware. It was called Camp Lenape. And it was at that time, it was no longer exclusively just for kids with disabilities. Instead, it became an all-inclusive camp, but primarily still centred on, you know, children with disabilities to, you know, go out and have fun and be able to swim and engage in music programs and, you know, random arts and crafts or whatever the case may be. And so I started off as a volunteer, which then for a lot of us, it was making sure that for the kids that couldn't feed themselves, right, that we would be there to help feed. And then we swam every day because as you know, with the child with cerebral palsy, you know, water therapy is hugely beneficial for, you know, just relaxation of the muscles and everything else. And so we would be responsible for changing undergarments. We would be responsible for getting them into their bathing suits, getting them redressed, those types of things.

I enjoyed it and just found that it was a very rewarding experience. Even, you know, I was very, very young at the time. And then the following year, we had moved back to Delaware at that point in time, I'm New Jersey because my dad had retired from the military. So this was 2001 because we, my senior year of high school was actually during September 11. So it's the only reason I even remember, I think the years. But they had asked me to come back. And at that point in time, then I was a pool aide. So all day long, I was just with kids inside the pool, which, you know, as a teenager, once again, that's really fun. And then from there, I became the music director for the summer before I went off to college. And so that is where I think my love and my understanding for the disability community.  You know, prior to that, we didn't really have anybody in my family that had a diagnosis. I'm not gonna say that, I'm just going to sit here and say that there wasn't maybe some, you know, non-visible disability there. But, you know, that was really where I just learned about the community. And I never thought that that's where my career path would land me. From a very young age, starting in fifth grade, I knew I wanted to be a lawyer. Back then, I would tell you I was going to do corporate law because I'm originally from Delaware, every single Fortune 500 company is, you know, that's where they're incorporated. And, you know, Delaware has special courts just for corporate law. And so whenever I went through law school, that's what I focused on.

And whenever I came out of law school, I landed my first job. And within the first three months of my practice, I had to work on my first special needs trust. It was an elder law firm. I didn't even know what elder law was. I did not know that like disability special needs, like none of that was actually like a law practice thing. I guess I just never connected it. I thought more social work, right? And so, I immediately like grabbed on to the special needs trust arena. And so by within the first six months, I knew a lot about, you know, just the protection of assets. It took longer for me to understand the intricacies of all the assets that are available here in the States. Yeah, so that's how my career path just kind of landed. And now at the end of the day, I get to go home like I did good today. I did good work. I helped people today. And so yeah, that's, that's how it all kind of developed.

Valerie

Wow. That's pretty cool. I find it interesting how sometimes we are led into our path. I think of myself, I've been a physiotherapist for a very long time. And I remember as a student, going to a place called Field Head Hospital, which had a lot of people with disabilities, more physical disabilities that were there. And I loved that placement, like I loved being with them had no idea this would be my life, because my oldest child is total care. So I just find it interesting how we sometimes get led into our path, our career path.

Shannon

You probably can relate to this, I do believe that it teaches us a whole new world of patience and empathy too, especially whenever it now becomes very personal nature to us, right. And so just last week I had an elderly woman who had an accident in my office, right. And of course, my receptionist has never had to deal with that before. And I'm like, it's okay, like this just happens. You know what I mean? Whereas I could also see me in my younger years be like, Oh, my goodness, like what, you know, what is this? And so I just think that sometimes, you know, yes, some of those like formative things like happen and they lead us in a path. But I also believe that it also teaches us other valuable skills in general. I'm from the northern part of the United States. And so very fast paced, very like, we don't got time to deal with anything. Very direct. And I do believe that with Ainsley's diagnosis, it has taught me to be much more patient, much more kind of understanding and it requires me to slow down a little bit more than, you know, so I believe that there's learning lessons involved in, you know, that that path as well. 

Valerie

Absolutely. Love that. Love that. All right. So for our audience who may not be familiar with guardianship, can you explain more about that for us?

Shannon

You know, here in the States, I'll tell you that guardianship is going to be very state specific in terms of what is the actual process, right. And fundamentally, the big thing is, is that, you know, in the States, the second that we turn age 18, we are now our own person. For some of my families, it's something that like we don't even think about because when you do have a child that let’s say is total care, right, like your mom, and you know that even after age 18, you are mom and there's nothing that's going to change the fact that you’re mom. And so here, what we have to do is we have to actually petition the court to get the authority to be able to continue to make basic doctor's appointments, to be the one to determine what the course of care is going to be. Because absent that authority, technically, the individual themselves has the ability to make their own decisions. You know, what I have found is that a lot of doctor’s offices or even health insurance companies can be a little bit more flexible whenever you do have, you know, a history with them. So for instance, if you have your child's pediatrician that has been with them since they were little and they know this child is total care, the office is much more there and available to say like, yes, we know that we need to make this medical decision. Yes, we know that mom needs to be part of the doctor's appointment. But, when you have, there's some doctors offices and it's becoming more and more strict because of HIPAA rules here in the states that basically say sorry, but you don't have any authority to speak on behalf of your child. And so, in Virginia, we can file at 17 and a half to make sure that then we've got the authority at age 18. So we're not missing a beat. But absent that we do run into problems and what the process, at least here looks like is we've got to file a petition. And we have to have some sort of medical evaluation that says, you know, that yes, this person is incapacitated. Some states will require the doctor to actually be subpoenaed and show up at the court hearing. You know, and so it just kind of depends on practice in Pennsylvania and for a long time they wanted the doctors physically there but they have moved to a written evaluation system now like Virginia has.

And so then, you know, we have to a guardian ad litem is appointed in most states and that is because that individual is designed to kind of investigate their the living conditions appropriate. Are the, are the parents, you know, good parents, because I hate to say it, not all parents are great parents and adaptable to, you know, their child's needs. And then, is the person really incapacitated. It's the same process that we use for elderly people and so for a lot of my families are like, well, who else would make decisions who else would be a… you know what I mean like those kind of intrinsic decisions, but it's the same regardless of the age of the disability disability onset. Then we go to court in Virginia, we do not do much of anything virtually, you do have to physically appear the judge wants to see your face and essentially I think it's their way of saying like if this isn't important enough for you to come and show and take the time off and you know do this then, then you don't really care about going through this process right. And then once the court enters the order, in Virginia for the most part, because there's so many eyes to dot T's to cross. There's not a whole lot of fanfare at the court hearings. The judges do have to give some explanation explain to the parents what their duties are, but they've read the medical evaluations, they've read the guardian ad litems report, they've read the petition, which are all very, very clear cut in terms of where it is and if nobody's coming to contest, the judge is pretty much like I've read everything, is there anything else you want to offer at this point in time. Now I can't say it's the same with all states, right? And there's some states that allow an individual who can still make decisions to consent to a guardianship. And this is where in the states we've had a lot of high profile celebrity guardianship cases, you know, everything from Britney Spears to the football player from The Blind Side, the movie, The Blind Side. Sohim in particular, he had a voluntary guard guardianship, he had actually consented to it. That's not possible in Virginia. In Virginia point blank says that you have to be a incapacitated person. And that there's no lesser restrictive alternative. And so for us, I always tell my clients like it's not the  litems same as what you're seeing around, you know, from states like California or Tennessee where you have these voluntary things. This is in Virginia. It's very clear cut you. This is the only option here. So it's going to depend state by state on what that process looks like. But in a nutshell, it's kind of a very similar process as there's court hearing this petition. There's guardian ad appointed.

Valerie

Okay, thank you so much for that. It sounds like it's fairly similar in Canada, where I am in Alberta where we can at 17 and a half start their process because it does take up to six months if not longer. And same thing as parents, we have to apply to be the guardians of our child. I know when we were having to do this, I'm like, really? I've been doing this since my child was born. I had to do this and pay to be their guardian. But I'm understanding now as I'm maturing through this whole process, why that needs to be. And then the other thing I just want to point out as well, when you pick your guardian for an alternate, because my husband and I obviously are the guardian for our oldest child. So we had to pick an alternate in case anything happens to us. And so we picked an alternate and now we're actually redoing our wills, updating them because our children are older now. And I checked in with the guardian because I know her life is extremely busy. She has four grandchildren. She is so involved. She's still working full time. And so I didn't know if she had the bandwidth to take on my child should anything happen to Scott and I. So, checked in with her and she has decided to bow out. So I had no idea what the process was to change that alternate guardian. So I'm really basically having to go through the whole process again. I actually have a meeting on Tuesday.

So I have to pay the money again. We have to find the alternate. We have to get references for them. And then the whole thing will go through the court. It will be expedited because we're just changing one thing. We're just changing the name of the alternate guardian. So just to make people aware that when you choose your guardian, if possible, choose them for life.

Shannon

And one of the questions I have, and this might be a Canada specific thing. Do you have to have an alternate guardian put in place? Because in the States, like in Virginia, we do not have to. We will call it a standby guardian. So I have the option to do a standby guardian. I'm actually working on one right now where we're going to appoint a stepfather because the biological father has passed. So stepfather and two siblings. So that way there's a team. And as needs change, any of them can kind of do what needs to occur, but that's not required. Instead by will, we can actually appoint who that recommended guardian is. And the courts are then supposed to give deference to that, what the will says in terms of guardian.

Valerie

Yeah. No, here we have to have an alternate guardian. And as I say, now I'm having to go through the process again just to change one name. Anyway, don’t get me started. It is the process. It is the process. So I just have to roll with it. Anyhow, so I just have a question for you, Shannon, what do parents need to be aware of when it comes to estate planning?

Shannon

So I think the biggest thing is, so in the States, you know, most families are very familiar with, we need a will, right? There's a couple different layers here. The first one is that historically in the States, a lot of people would just totally disinherit their child with a disability. And what it was is they were afraid to leave them anything and lose the benefits that help sustain them, right? So either the social security program, which by the way, when a parent dies, as long as they were age 22 prior to the disability, they will latch into their parents' work record and they can have a million dollars and they still get the income from that. They'll also trigger into our Medicare system, which is the same system that our retirees use. But it says Medicaid benefits that are truly critical, particularly whenever we have children who need hands-on care. You know, historically, they would leave it to another child and then like with the moral obligation that that child would then take care of the other child. So I always step back and I tell the family, I'm like, you need to give what you want for that child to that child, because at the end of the day, if your other child dies, their estate plan takes over, right? So you know that morally that yes, this child will take care of their sibling. However, what happens is, is they're not thinking when they do their estate plan like, hey, is my wife going to take care of, you know, my sibling the same way that I would. Or do they get into some sort of creditor issue where the creditors now take that money, right? And so in the States, we have what are called special needs trust. They were established under a law called over 93. And we've had them since 1993. And it's a vehicle where we can put money in and basically Medicaid and SSI cannot look at the assets that are in there. Because it's designed to supplement and not supplant what public benefits is otherwise providing. And so I think that that's kind of one of the biggest things is just making sure that you leave to the individual what you want that individual to have, I think is kind of the biggest mistake that I see.

Shannon

And then secondarily, I would say, whoever you're entrusting your children with, like, make sure they want to do it. Just because I mean, and you kind of touched upon that with the guardianship and I don't think it's that she doesn't want to do it. She's just saying the bandwidth to do this right now. But I think so many families are like, well, clearly, their their siblings going to do it. But, you know, I know that there are other families that I have that are saying like, hey, by the way, like, it's going to detrimentally impact my other child in way that I want them to be able to focus on their own families or whatever it might be. And so that succession planning piece, I think is hugely overlooked in the community because as parents, we want our kid in our home, right? We want our kid and we're bad parents if we consider any alternative living arrangements that may provide for some succession when we're not here. And so I still have clients who are in their 90s, which means their kids are 50, 60, but their kids are at home, you know, in any day at this point, you know, in their 90s, it could be their last day here. I mean, it's the same with all of us, but as we're hitting that age, right? And so I talked to them about transition planning, you know, what's the plan when you're not here?

Shannon

And some of them don't have other family that's going to step in. They haven't thought about it because it's even harder when you don't have family, especially in my autism community. And I know that you'll be able to relate to this. You know, change is difficult for us as just human beings. We don't like change. But when you throw that change in the mix, in particular with my autism community, it's hugely devastating, right? And so, if we're now going to say, hey, you've got to pick up an uproot from the house, the only house that you've known forever, for however long it's going to be. And your parents are not here. You're the only people that you've ever known to support you are not here to help through that transition. It's hugely impactful and detrimental to the individual themselves. And so, I encourage families to think through that process. You know, only the family can decipher when that transition is appropriate. So I think that those are my two things. Leave assets where you want them and then think through that transition plan and execute the transition plan before you die.

Valerie

Yes. And this is why I do what I do forever home for your kids with disabilities, because I've seen that happen. And for us, I got to a place where I couldn't sustain it anymore because Melody-Anne is total care. And then I have my second child with their disabilities and their need of parental supervision. And the scaffolding that we have to do to try to take them to independence.

And, same thing as you're saying that transition piece, I just felt like I needed to have something because we don't have, Scott and I don't have any family anywhere close to us. I think 12 hours is the closest and on my family's across the ocean. And so it became important for us because we don't want to leave our youngest with the responsibility of their older sibling. And so, we just needed to have something that was sustainable. And so that's why we set up Melody-Anne in her forever home. It turned out to be a beautiful thing for us because she got to stay in the home because it's wheelchair accessible. We moved out.

So the transition for her was so much easier because she was in her same home, in her same bedroom with four staff that we had trained. And we had an agency come in then and provide the rest of the staffing. And so she had people that were familiar with her and her care. So I honestly, Shannon have the peace now if anything were to happen to Scott and I, Melody-Anne's life would continue as it has because she transitioned so beautifully. The staff now know her really well. She is quite the advocate for herself, even though she's nonverbal. She has a communication device, but it's just been so gorgeous to see her grow as an independent person. And she would never have had that opportunity if we hadn't set her up. So that's why I do what I do to help other families realize it is possible. You can direct what you want for your child with their forever home. And as you say, then the succession when you pass, it's going to be smooth.

Shannon

Well, and I think, you know, I hear a lot of parents like there's like an internal struggle and I know we talked about the grace to, you know, just from looking back at things but I'm like, it's okay to allow others to help. Right? Because I think that a lot of us where like this is our obligation, this is our responsibility and generally we want to be the ones to be responsible. Right? And so I think understanding that it's okay for somebody else to help, you know, and I have a lot of conversation my family like, had this child been a neurotypical child. Right? Wouldn't we want them to have their own environment we would want them to live an independent life. We're just saying that this child's independence is a different form of independence than maybe had they been a neurotypical child. We all want our kids to grow up, fly the coop, have families of their own, you know.  And so for Melody-Anne, she has her own place, right, which is what we would want for any children that we have. And her family is her caregivers, who love and support her on a day in and day out basis. And that's okay to celebrate that it doesn't have to be, I can't believe I'm doing this to my child. And so I look at things from a very optimistic point of view whenever I'm having these conversations, even with my clients.

Shannon

I know one of the things here in the States, you know, Medicaid will pay for attendant caregivers. And depending on like in Virginia, depending on the waiver, you can get 24 hour supports inside the home. It's hard to get the 24 hour but you know, it's doable. And what I see is a lot of families, they are essentially saying, well, nobody can provide the care that I provide. I need to stay home with my child, I get paid on a Medicaid waiver system. And they don't bring in an outside help. While I understand that because I am a firm believer that nobody provides the same care that you do as a family member, right? And it doesn't matter once again, even my elderly population to get them into a nursing home, they don't get the same type of care as if a daughter was there doing it. But I also say, if something were to happen to mom, like let's just say she had to go to the hospital, you know, and she's the primary caregiver, what happens? Nobody's properly trained to be able to provide that care. So once again, it's about bringing in that assistance and saying I don't have to do it all myself. And looking back at it and saying like, is this really in the best interest of my child, from the perspective of all it takes is one crisis, and the cards just fall, right?

And so I wholly support your program and forever home because of the fact that you want to talk about that transition and talking about you know, the additional supports and it doesn't have to just be the family. And quite frankly, it's not always in the best interest of the child to just be a family member.

Valerie

Absolutely. Absolutely. And we consider it a team effort, right? Scott and I are still very involved with what goes on in Melody-Anne's life. We happen to be the landlords of the home, we still own the home. And so for us, we're still involved in her care, her programming. And there's a lot of dialogue between the house coordinator and myself, we meet weekly to sort of discuss how Melody-Anne's week's gone. So you can be as involved as you want to be. And as I say, I just look at it as a team approach. And, as you so rightly said, no one else is going to care for our child the way we do. But it doesn't mean to say that somebody else caring is bad care.

Valerie

All right. I've so enjoyed our conversation. I just want to ask you, what's the difference between estate planning and financial planning?

Shannon

Estate planning is going to be much more legal planning, right? Getting documents put in place, making sure that the provisions are in there to take care of whatever it might be. Historically, and working with my community, everybody thinks estate planning is just planning for death. I believe that estate planning is actually planning for death or disability. Right? And so that could include old age, you know, dementia, whatever.

And so powers of attorney, advance directives, which will give somebody the authority to make decisions for you whenever you can't make them. And then that death planning, whether or not it involves wills. A lot of us look at trust as death planning, but they can also be life planning tools as well. So just that basic, you know, underlying arch of who's going to be able to make decisions. What can happen with your assets? What authority do we give agents? That would be more the estate planning side. There is a financial planning component. I am different in that I do have my series 65 license. I do have my life and health license. So I do have the financial component side of it. But the vast majority of lawyers don't have that. They are lawyers and their job is to make sure that we've got surrogate decision makers and that our assets are passing how we need them to. The financial planning side of things is going to be twofold. Do you have the assets necessary for the savings and income and everything else to get through your retirement? Right. And then secondarily for my families with, you know, individual disabilities, the other issue is going to be, and have we provided enough support for them whenever we're not here? You know, whether or not it be life insurance so that, you know, there's some sort of, you know, windfall whenever something does happen to you to help support the care levels that you guys are providing. Or, you know, whether or not it be looking at where do you pull money from, right? And how do you invest the assets, those types of things. So that's going to be the key indicators between the two.

Valerie

Okay. Thank you so much. All right, Shannon, where can our audience go to find out a little bit more about you?

Shannon

Okay. So my website, it's still being built out. I just started my own firm on March 31st. So….

Valerie

Congratulations. 

Shannon

I've been doing this for 12 years. And so it was time for me to fly the parental coop of other lawyers. And so I'm on my own, but it's www.eastcoast-elderlaw.com. And if anybody is looking for a certified elder law attorney in their area, because that is the gold standard in terms of, do these people know what they're actually talking about? If you go to NELF.com, N E L F dot com, that is where your CELA designated attorneys are going to be. There are also some great special needs practitioners around the country that are not certified elder law attorneys. And you can find them at the Special Needs Alliance, which is the abbreviation is SNA. And I think it's specialneedsalliance.org. I believe is the website there. But those are kind of going to be your key indicators or, you know, your key contact information for anybody that does what I do.

Valerie

Okay. Awesome. Thank you so much. Before we conclude our conversation, I'd love to hear some words of encouragement from you to parents who are raising kids with disabilities. What message would you like to share with them to offer them some inspiration?

Shannon

I've probably already touched on it, but it's okay to ask for help. It's okay to not have the answers. And, you know, you're just trying to get through the day to day. Have some grace for yourself.

Valerie

Yeah. Okay. Well, thank you so much, Shannon. It's been lovely to have you on the show. And I just wish you all the best as you have launched on your own. So best wishes with all of that.

Shannon

Appreciate it. Thank you so much. 

Valerie

You're welcome. So, audience, keep building your child's future. Live with Intention - Embrace the Journey.