How to Approach Special Needs Estate Planning Through Wills, Trusts, and Guardianships
Oct 05, 2023Episode 16
Sherri Lund & Carly Maderer
Join us in Episode 16 of the Probate Podcast as estate planning attorney Carly Maderer shares her expertise on special needs trusts, guardianship designations, and ensuring inheritance doesn’t disqualify a beneficiary from benefits like SSDI and SSI.
What You'll Learn: -The resources and community support provided by the Dup15Q Alliance. -How special needs trusts, SSI, and Medicaid intersect. -The estate planning process for beneficiaries with special needs and disabilities. -Considerations when appointing a guardian for someone with special needs. -Strategies for avoiding probate issues for special needs family members. -Tips for initiating the estate planning conversation with family members -Steps to reclaim benefits when a trust wasn't initially established.
Timestamps 0:00 Introducing Carly Maderer - Special Needs Estate Planning Expert 13:41 Dup15Q Diagnosis and the link with Autism 15:10 The Dup15Q alliance and community support resources 16:47 Special Needs Estate Planning 101 20:03 Special needs trusts, SSI and Medicaid 24:51 The estate planning process for beneficiaries with special needs and disabilities 27:51 What is the point of a corporate trustee? 30:59 Choosing who to appoint as guardian for someone with special needs 33:13 Avoiding probate issues for a special needs family member 36:10 How to start the estate planning conversation 43:27 Getting benefits back when there wasn't a trust
ABOUT CARLY: Carly Maderer, a seasoned business and estate planning attorney based in northwest Houston, Texas, brings a wealth of experience to the field. Carly co-founded Tyler and Maderer, PLLC in 2015, a comprehensive disability law firm specializing in Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), guardianship, estate planning, special needs trusts, and Medicaid planning. Carly's dedication to this area of law was inspired by her personal journey navigating her daughter Kennedy’s Isodicentric Dup15q diagnosis. Today, she is committed to making special needs planning a part of more wills, trusts, and guardianships with a primary goal of helping families protect the SSDI benefits their loved ones are entitled to.
Disclosure: The information shared on The Probate Podcast is for educational and informational purposes only and does not constitute legal or financial advice. We strongly recommend consulting with a professional for advice specific to your situation. If you need help finding a professional, feel free to reach out to us at www.willowwoodsolutions.com/contact.
Please consider kindly rating this show so others can find it!
Join us in Episode 16 of the Probate Podcast as estate planning attorney Carly Maderer shares her expertise on special needs trusts, guardianship designations, and ensuring inheritance doesn’t disqualify a beneficiary from benefits like SSDI and SSI.
What You'll Learn: -The resources and community support provided by the Dup15Q Alliance. -How special needs trusts, SSI, and Medicaid intersect. -The estate planning process for beneficiaries with special needs and disabilities. -Considerations when appointing a guardian for someone with special needs. -Strategies for avoiding probate issues for special needs family members. -Tips for initiating the estate planning conversation with family members -Steps to reclaim benefits when a trust wasn't initially established.
Timestamps 0:00 Introducing Carly Maderer - Special Needs Estate Planning Expert 13:41 Dup15Q Diagnosis and the link with Autism 15:10 The Dup15Q alliance and community support resources 16:47 Special Needs Estate Planning 101 20:03 Special needs trusts, SSI and Medicaid 24:51 The estate planning process for beneficiaries with special needs and disabilities 27:51 What is the point of a corporate trustee? 30:59 Choosing who to appoint as guardian for someone with special needs 33:13 Avoiding probate issues for a special needs family member 36:10 How to start the estate planning conversation 43:27 Getting benefits back when there wasn't a trust
ABOUT CARLY: Carly Maderer, a seasoned business and estate planning attorney based in northwest Houston, Texas, brings a wealth of experience to the field. Carly co-founded Tyler and Maderer, PLLC in 2015, a comprehensive disability law firm specializing in Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), guardianship, estate planning, special needs trusts, and Medicaid planning. Carly's dedication to this area of law was inspired by her personal journey navigating her daughter Kennedy’s Isodicentric Dup15q diagnosis. Today, she is committed to making special needs planning a part of more wills, trusts, and guardianships with a primary goal of helping families protect the SSDI benefits their loved ones are entitled to.
Disclosure: The information shared on The Probate Podcast is for educational and informational purposes only and does not constitute legal or financial advice. We strongly recommend consulting with a professional for advice specific to your situation. If you need help finding a professional, feel free to reach out to us at www.willowwoodsolutions.com/contact.
Please consider kindly rating this show so others can find it!
Hi there, this is Sherri Lund. Welcome to another episode of the probate podcast. I'm so glad to have you here. This is such an important project for me, because it's a way to educate the community and get information out so that you can plan your own estate and for your family, protect them, protect your assets. And make the process smoother moving forward, whatever that might look like for you. And so today, my guest is Carly Maderer. Carly, so excited to have her on as a guest today. So you're going to want to grab your pen and paper. Carly is an attorney here in the Houston area and her specialty is special needs estate planning. Thank you so much Carly for joining me. I'm so glad you're here. Yes. Thank you. Sherri. I'm glad to be here. Carly's a business and estate planning attorney in Northwest Houston, Texas. She received her undergraduate degree in management from Oklahoma State University, and then she went on and got a joint MBA and J. D. from Oklahoma City University. In 2015, Carly and her friend from law school, Gidget Tyler, opened the doors of Tyler and Matterer, and they are now a full service disability law firm. They help with Supplemental Security Income, SSI. Social Security Disability Insurance, SSDI, Guardianship, Estate Planning, Special Needs Trust, and Medicaid Planning. Carly and her husband, Jason, were blessed with four children, Tatum, Piper, Kennedy, and Jace. And in 2017, Kennedy was diagnosed with Isodicentric 15 Q. It was this life event that inspired Carly to focus primarily on special needs. the state planning for her own family's protection and then to help others with theirs. Carly's licensed to practice in the state of Texas and she uses her personal experience and legal intellect when advising clients about their last will and testaments, testamentary trusts, revocable family trusts, special needs trusts, and powers of attorney. Carly's a member of the Academy of Special Needs Planners and the Houston Northwest Bar Association. In her spare time, Carly volunteers and donates her legal services to the Arbor School, which is a children with special needs and disabilities, the Steel Magnolia Moms, which is a non profit offering support to moms with children with disabilities. The Kardia Christian Academy is a non profit Christian school, and the Dup15Q Alliance. is a non profit alliance helping families whose loved one has been diagnosed with the Dup15Q syndrome. That's a lot, Carly, and I'm a mom with five kids. Of course, they're all adult kids now, but hats off to you for all that you are doing and serving in so many ways. Before we get into all that, who is Carly as a person if I were to meet you in the park somewhere. What do you like to do as a person just for you. Yes. I think that, you've already described my family life. So you know that I'm a mom and I'm a spouse. And of course that takes up a lot of my time. And I'm also an attorney, but I think that, the big thing about Carly and people see this a lot, if they just bumped into me on the street, I love the color orange. I am a graduate from Oklahoma State University. My whole family went to OSU. Okay. And we bleed orange through and through you know, you could see me going go Pokes constantly. We're a huge sports family. Always have, we always have been. And even in the Houston community, huge sports fan. Always going to Astros games, Texans, Dynamos. We love it all. So it's, great that the Astros went back to orange because we love orange. So I think that, a lot of people that know me personally will be like, Oh yeah, she bleeds orange. That's so cute. We went to, my husband and I went to Oregon State University, also OSU, and our colors were also black and white black and orange. Yeah, that's kind of weird, but we're the Beavers Yeah, we're the cowboys. Okay, yeah, that's better than a Beaver, oh gosh. Thank you for telling us about that. Can you tell us about Kennedy a little bit? Yeah, so we had two little girls and we were so excited to have three girls. So we thought it would just be like kind of a walk in the park, right? And then life laughs at you. So she was born naturally and thought everything went well. And she didn't have signs right away, but kind of mama's intuition, I knew something was off. When she was a baby, she didn't track very well. There was something going on with her vision. She was very stiff on one side of her body. She was diagnosed with a lot of different things early on. Some were misdiagnoses. But I constantly kept pushing. I kept saying, I know there's something wrong. I know there's something wrong. And then at five and a half months, she started having infantile spasms, which is the worst type of seizures a little infant could have. And when they clocked her on the EEG, she was having like 300 within an hour. The neurologist did say, If we don't get it under control, she will be brain dead, have significant brain damage. We still didn't have the diagnosis of why this was happening. But we just focused on getting those under control and we did, thankfully she was put on a lot of medication. So that kind of set her back as well. But finally, around nine months old, we did genetic testing. There was a lot of tests going on and everything was coming back with just a big question mark. When we did do genetic testing it's called a chromosome microarray. It came back and showed that she had a duplication on her 15q chromosome. And once we got that diagnosis, everything made so much more sense. I had been on a roller coaster for nine months and I just didn't understand why. So it was kind of a breath of fresh air, so to speak, to be like, Oh, we have a, we actually have a diagnosis. We can pinpoint all these things. And then I got connected to the Dup15Q Alliance, which: game changer that we have that we're so blessed that because of genetic testing, our community has grown and we have so many other families putting an input about what to expect at certain ages and certain developmental milestones with our kiddos. So that's Kennedy. I am... she struggled with seizures for a long time, actually. And we finally got them under control after she was hospitalized at 2 years old. We had another scare with her at 2. She had to have 2 rescue drugs. And we are in the hospital for a long time, so we didn't know what her future held. We didn't know how her brain was going to be truly affected. But, thankfully through a lot of help of doctors, we have been in seizure control since 2019 which still doesn't seem possible when I say it out loud, but she's doing amazing. She's nonverbal. But, she communicates with her little squeals and when she reaches for things and a lot of body language. So we've kinda, pick up on cues from her. And she's just a sweetheart, just understands love and understands who we are and, and what she needs, but just some basic needs. But intellectually speaking, she'll need help her whole life. Just based on the research of Dup15Q most of the children do not reach over like an eight year old mental capacity. But that's Kennedy. And then that year in 2019, I had just had a baby as well. That was a lot that year. But once she was healthy and we kind of figured out how to be a family of six. I felt like I could come up for air finally. Those first few years were pretty rough. Yeah, I'm sure. And in a previous business that I had, I was a health practitioner and I worked with clients who had these mysterious symptoms. And once we could figure out what they were, then like you're saying that a lot of things just kind of fell into place and we didn't have to keep looking under every rock and behind every cloud. Yeah. It was. Okay, now we have a plan. Now we know what it is. Now we can go with that plan and so that really helps. How old is Kennedy now? She is six and a half. Cute. So tell us a little bit about the condition itself. How does it present itself? And I'm really hoping that our conversation today will turn some aha moments for some moms and dads out there who are also wondering what they might be dealing with. So if you could describe, I'm sure there's a variety of things, but in general what Does it present itself as? Yeah, of course. So for Kennedy, we found out even, sooner than possibly some families with this with the genetic condition because she had those seizures. So about a third of the Dup15Q kids will experience seizures and, experience one or two their whole life. And then some have, intractable epilepsy, like Kennedy where, it's it's scary, and it comes in all different types of seizures, not just pinpointed to one type. And then low muscle tone, similar to down syndrome, location on the 21 chromosome, they can have some low muscle tone. And Kennedy definitely has the low muscle tone, hypotonia, and I knew that pretty soon. I didn't know what to look for. I didn't know the terminology, but I knew she couldn't hold her head up. And I thought that was always very strange. She got diagnosed with torticollis, which is like, tight neck syndrome. But again, why did she have that torticollis? Chances are it's because in utero she had that low muscle tone and couldn't move as much. So she got pretty squanched in there and just couldn't move like most babies. So the low tone does cause problems even today. That's why her gait is off. Her walking ability is very off. She can walk. And sometimes she runs, but she kind of bounds and she scooches and, you know, definitely her own way. I remember going to a physical development doctor. And he looked, he took one look at the way she walked and he said, I've been doing this for 30 years. I haven't seen a kid walk like that. Like, we call it our unicorn baby. That tends to present itself in most Dup15Q kids and also autism. The majority of Dup15Q children will get the autism diagnosis. And autism diagnosis is clinical. So if you think about what that term really means that it can be subjective. There's no blood tests for autism, right? There's genetic components that like do 15q syndrome, they say, Oh, because of this duplication on their chromosome, it can lead to a clinical diagnosis of autism. But the typical autism signs, Kennedy had them from the beginning. So she got that diagnosis at two, which a lot of the times practitioners won't- they won't even get the diagnosis until they're a little older, but based on what she was doing and her genetic condition and doing a little bit of research, I brought all my research with me, we got the diagnosis at 2. It opened a lot of doors for therapies. That's the big thing is, early intervention. We got ABA therapy very early on physical therapy, occupational therapy, all because of those low tone diagnosis, autism diagnosis, all of those clinical diagnoses we got based on her condition, And all I wanted was to just get her help, get her healthy. I was able to find an ABA therapy center that could really give her the constant therapy she needed, I was driving everywhere trying to get her into these therapies when really she needed an all day intense intervention and that came with the ABA therapy. Yes, we have a special needs grandchild and we were able to get that for her as well. It made a huge impact on the changes that we were able to see in her. Yeah. So did I hear you say that 1 3rd have seizures? So that means that 2 3rds don't. Yes, and that statistic is probably a little older again with more genetic testing. For example, there was a child that had a seizure at 16 years old. He was a very high functioning autistic, spoken, all of that. But because he had that one seizure, then the doctors were like let's do some genetic testing. And sure enough, he had DUP15Q, actually the same type that Kennedy has which is rare that he was so high functioning and can communicate because a lot are nonverbal. But again, it goes back to the seizures. If your child with DUP15Q struggles with seizures, kind of from day one, like Kennedy, they're going to have more intellectual disability. You know, We went to the Dup15Q conference recently in July, and it was amazing to see the wide variety of abilities and it wasn't majority, about half were not experiencing seizures, which is so great. It is great, but it also means that they may not even know that they need to have the testing. That's what I was thinking was that the seizures allowed you to get the early intervention and all that because you needed to find your answers so quickly. So a lot of moms and dads may have questions about what's going on and not have those seizures to help them find that information. Exactly and I will say a lot of the kids would get the autism diagnosis 1st, and then follow up with genetic testing and realize that they had this dup15q syndrome. That's another good point is that, genetic testing, it's available, it should be all the insurance companies should provide it, especially if you get an autism diagnosis or low tone or, something clinically that you do want to, maybe not even try to explain, just try to understand. And you could also see if there's something hereditary in that genetic diagnosis for future planning, future children. Kennedy's syndrome was completely de novo, which means neither my husband Jason or I were a carrier. So it was just, it was very random. So can we talk about the link between autism and DUP15Q? it sounds like every Dup15Q or the majority of them could qualify for an autism diagnosis, but it doesn't necessarily have to go the other way around. Is that am I hearing you correctly? Yeah, definitely. I think autism is now diagnosed more and explains a lot of behavior issues with kids. What's interesting about Dup15Q is: we don't really fit in the box of autism. We get the diagnosis. I truly think because of our intellectual disability the Dup15Q syndrome and community. A lot of our kids don't have the behavior issues that sometimes comes with autism, or the social anxiety. For example, but again, I go back to, kids like Kennedy that maybe struggled with seizures and are more intellectually challenged. She doesn't know to be socially anxious, right? She's just everybody. I will see her kind of shy away if there's a huge crowd and there's a lot of overstimulation and that's very typical of, kids that are diagnosed with autism. It's that overstimulation that can just be overwhelming for them. I definitely see that with Kennedy and other Dup15Q kiddos. And the sensory seeking, that's what really got us the diagnosis of autism. She constantly sensory seeks and I mean that, that presents itself so many different ways but I would say the majority of Dup15Q kiddos will stim in that way, and that's why they're able to get the autistic diagnosis. It sounds like the community that you guys have is growing and so supportive. Can you describe some of your volunteer work that I mentioned earlier? Yeah, sure. So the Dup15Q community reached out to our law firm because they knew that not only was I getting into special needs planning and helping draft special needs trust through estate plans for families in Texas but they also knew about our law firm because of my partner in the firm, Gidget Tyler. She has been helping people get on social security and disability benefits for the past 14 years. And she has a great success rate. She started in Oklahoma and now she's in Texas. And that's under federal law. So social security is handled through federal law. So she can give advice across state lines because it's, federally funded program. And so they asked us if they could do this help ticket. The Dup15Q Alliance asked if we could do a help ticket. And that just meant, when a family is needing information on social security benefits, wants to understand what a special needs trust is, can they reach out to you all through email and Would you be able to respond and give some advice or point them in the right direction? And we said, absolutely, let's do that. And so we started doing it and then we just kept extending it. And so we've done it for the past two years and it actually allowed Gidget and I to learn, and at the Dup15Q conference I was allowed to also step in and have a table where they could come and do some Q and A with me. So I love that. I loved helping families kind of point them in the right direction. They hadn't done any type of estate planning or legal planning and they knew they needed to. I mean, It's a big deal to get people to make an estate plan. The majority of us don't get around to doing it. What's the difference between an estate plan, a normal estate plan, and then one for special needs. I will say not a huge difference. Every estate planning attorney should have a basic understanding and knowledge of a special needs trust. It is something that could be as simple as a contingent special needs trust in the will where just in case one of your loved ones, one of your beneficiaries, that you're leaving funds to qualifies for any type of public benefits at 18 or 19 or 30. Instead of it going outright to that beneficiary, put it in what's called a special needs trust so that we safeguard that money, that inheritance. Those countable resource assets when you're trying to qualify for SSI, instead of it going out right to that beneficiary, it is safeguarded in this special needs trust, and they won't be kicked off of those benefits, and they can continue on how they've been living. I put language in all of my wills as that just in case as that backup plan. So that's the basic estate plan is a will, power of attorney, which are so important to I could go on and on about that one. That's when, there's an accident, someone's incapacitated and they need access to that person's bank account or get the car out of the impound. It's only in that person's name. That person is now incapacitated or in surgery. And that impound yard is charging 200 a day. Having that power of attorney is gold to say, I can sign on their behalf. They're obviously not able to sign right now. And they're able to help in that way. Same with medical power of attorney help make medical decisions. That is the basic estate plan. It's wills. For each spouse if they're married and then the power of attorneys and then a declaration of guardian, if you have minor children, you do want to dictate who is the best to raise your children. And so many clients of mine say, Oh, my family will just do what's best. I know they will. They'll figure it out. We have seen identical twin brothers get torn apart by a$10000 estate and their families completely torn apart because nothing was, set in stone, nothing was set in motion. Nothing was planned ahead of time. So everyone thought, they had a better idea of what's best for the kids or what's best for the parents. If you have elderly parents. And then on the special needs aspect, there are, relatives of mine that I absolutely would not put in place for Kennedy. One, I don't think that they would want that type of job for her. I think that they might step in and do what's best. But I know who I would appoint specifically that could handle all of the issues that, that come up medically with her. And if something were to happen when she was even adult, because she will always need a guardian. She will qualify for guardianship at 18. And I want to make sure that if something happens to my husband and I, that there are people for the rest of her life that we have designated to care for her. And you don't want any argument, you know, the more argument the more likely the state's going to get involved. And so that's why it's so important for every client to have this planning done. If you have kids, if you have a home, a home is a huge asset and you want to make sure it's divided up evenly. And then of course, if you do have a child with disabilities, like, my husband and I do like Kennedy and we know she will need care for the rest of her life. We know that at 18, she'll qualify for SSI, 941 a month. That helps, right? It helps for rent or, food. And that's put in place by Social Security and federal government. But in Texas, $1 of SSI will qualify you for Medicaid. So that's what people really need for their children or for their adult disabled child is the access to Medicaid that supplemental medical insurance, even if they have private insurance, because there are a lot of day programs and even extended living programs right when they reach a certain age and they want to maybe have some independent and live in some type of group home or something, whatever it may be.. Some of those facilities only take Medicaid or have to at least bill Medicaid something before they can then accept private insurance. So that is why it's important, even if you've saved beautifully and you think, oh we have, a million dollar life insurance policy that'll cover our child for the rest of their life. It may not, you really want to safeguard that amount of money, put it into a special needs trust. And then let that child still qualify for the benefits that they deserve and that can help them for the majority of their life. So when you put it into trust, it's not in their name, but they can get the coverage that they need from that and so the fact that it's set aside in the entities name and the trust name. Correct. That's a good question because I know it can get very confusing on even what a trust is majority of my clients will set up what's called a standalone third party supplemental needs trust. Also known as a special needs trust those terms go hand in hand a lot. Third party means someone other than the beneficiary is setting it up so someone other than the disabled beneficiary has created this trust. It's in their name, so to speak, for the benefit of the disabled child. Majority of my clients will set it up as revocable, meaning they can revoke it at any time. So, If anything were to happen to that child, or they get better and their disability will not, qualify them enough for benefits at 18. And they feel like they don't need the supplemental needs trust anymore. They can revoke it or they can amend it up to a certain time period, which is usually upon their passing. Upon the parents passing, it does become irrevocable. And then in that trust agreement, they have set up the trustees, either a corporate trustee, some financial institution that understands supplemental needs trust, or a family member that they have appointed to. And a trustee, that just means a fiduciary responsibility to manage those funds for the benefit of that disabled child that disabled beneficiary. And trustee management can get difficult. But the trustee can hire professionals. They can hire attorneys to help them understand it or to help them submit the right things. We always say, you might want to talk with a CPA as well- you want to understand from the tax issues involved with the special needs trust. It's actually usually named the beneficiary's name. Kennedy Maderer's Supplemental Needs Trust is the name of the trust. You start titling assets in the name of that trust, but the trustee is the person that holds on to those funds. So in my example of the revocable trust, it is still under the parent social security number. That's tax ID. It's not a full separate taxable entity yet. and again, it's revocable until their passing and then it is right on, like you said, a separate taxable entity. And, even until that time, Social Security, they're going to consider it a non countable resource. That's what we're really trying to accomplish is that Social Security does not count all of these funds over here in the name of the trust as a countable resource to the beneficiary. It's going to supplement that beneficiary's life, not supplant. Because it is Medicaid and SSI is income based. You have to be, essentially poor, you have to be a very low level income qualified. It's such a different world. Just from my personal experience when my husband and I were working with an attorney and putting our estate plan together, we talked about our grandchild and the special needs and, would we want to set aside specific funds for her? And the attorney said, not a good idea because it could disqualify for her from receiving some of these benefits that we talked about. Our hearts were in the right place, but we could have really messed things up for her by trying to be thoughtful and not knowing. So thankfully we spoke up to someone who knew what she was talking about instead of, you know, another family member that might say that sounds great, and cheer us on, but really speaking to a professional who knows what they're talking about could be critical in a situation like this. Obviously we talk about the directives and all of that and why you need those things, but you're the first person that I've heard that has these, the special needs provision in the actual, what you call a basic estate plan. You're the first person I've heard that has said it. And and I think it's brilliant because it's not just genetic issues that are create the special needs. Can you describe the process of going into this? Majority of my clients have come to me because they know through my network and just being a special needs parent, they know what I do already and they've heard that they need a special needs attorney. They've heard that going to, an attorney that doesn't have experience in this area will likely kind of steer them wrong as you've experienced or may, not even it will right just may not understand all of the nuances, especially at Social Security and Medicaid eligibility. Our intake form has a place that says, do you have, anyone in your family or any beneficiary that you're naming in this intake form, will they or are they receiving public benefits? Do they have a disability? If they check that at all, or if they even say, I need more information about this, then we go into kind of the special needs planning discussion. So that's a big thing, too. Also, what's nice is we have that extra kind of backup of here's how you qualify for SSI when your child reaches 18. So I will say the majority of my clients, they come to me, they send me an email, facebook messages. We have a, an inquiry on our website.... phone calls. And really they can come to me or Steven or Gidget. All three of us know special needs planning. But I'm the go-to on it, right? So I try to reach out to them personally through email or phone call. A lot of these inquiries will come in and I say, at first, what's a good number for me to call you and, talk with them for 15 minutes. I know I pretty much know exactly what they need. And that's when we set them up as a client. I get more information through an intake form, but I say,
look:
the best thing to do is let's schedule an hour and a half to two hour meeting, and we will go over this intake form in more detail. I would never start drafting anything until I truly understand the family and their child with disabilities or their adult child with disabilities. I've had a family come and their child was able to work. He had cerebral palsy. And it had some intellectual disability that came with it. But he, for the most part, he was able to work at a grocery store for the majority of his life and made decent money. And then now is able to qualify for SSDI because he's paid into the system. But if something were to happen to his mother or his father, which they are getting older, he needs someone to help manage these funds. And I know one of these questions I get a lot is what's a unique, estate plan? That was pretty unique because the parents really didn't have anyone in their life that could truly help if they were gone, it could truly help him with financial matters. He was intellectually not able to even understand how to manage the bank account and write checks and things like that. And unfortunately, there was a family member that may have taken advantage of him. So we needed to really put in safeguards where we appointed a trustee. I say corporate trustee, people hate that word, but honestly, there are great financial institutions out there and trust departments out there and trust companies out there that their whole goal is to help these people with disabilities, these adult disabled beneficiaries through the special needs trust. We did we got in touch with a great trust company and that's who we put into place. And we talked about who could be a caregiver who could go and check on him at certain stages of his life and we walked through, where he would live and that's what I love. I love really understanding the family. And because of all of that. But just things that could have gone wrong with that particular family. It was like a three hour meeting. It was pretty emotionally exhausting at the end of it. But once it was all signed and we had a plan, the parents were in tears, they were so grateful. I mean, These are parents that are in their eighties, right? And their son is 60 something and they're just, I hope, I hope he's taken care of when something happens to us. So there is no right or wrong time to start planning. Definitely earlier, the better. But every 10 years, your life could drastically change. Mine did. I never knew I needed a supplemental needs language in my will. And I always say, don't let any family member disinherit... that's not where we want to go. That's why the government allows us to set up these special needs trusts because we do want to help these disabled beneficiaries. We need to. They need extra money. SSI check and Medicaid does not cover even a quarter of what they need to survive, right? They need extra funds, but those extra funds cannot also count them against being able to qualify for Medicaid. So we are very passionate about it. And it's just a right that kids like Kennedy should have. It's not her fault that she was born with a disability. That's right. That's right. Yeah. And you bring up a good point to that. This is you're not finding a loophole and taking advantage of something that ... it is there for a reason. And And it's not it's not anything shady, like it's all up and up in what you're doing. Yeah, I think public benefits sometimes get a bad rap. You're right. Food stamps and things like that. People taking advantage and there's of course going to be bad actors out there. There's of course going to be people that take advantage of a system. Gidget, I feel like, is great at understanding what true disability, that word, that actual legal word to qualify for Social Security means. It means you can't work. If she knows that you've been working, or that you can work, and your disability won't qualify you, she will be honest and say, you will not qualify. You need to go work. You need to go do what you can with your limitations. We're not against working, right? It's these extreme conditions that truly qualify you because of your disability. Love that so much. What is the hardest part of making a plan? Honestly, what I hear the most is, I don't know who to appoint. It's the designation.
It's:
my parents are getting older, I don't think that they could handle this situation. My sister or my brother live, out of the country or even out of the state, they're not going to move here. It's that and I feel for them. There was this family that were able to, put in, I think they had 10 alternates and I got teared up. I started crying. I said. This is amazing, like what you've done. You're the community that has surrounded you based on this child that has extreme disabilities, but you have a huge support system that is so great and sometimes very hard to find because unfortunately, when you have a child with extreme special needs. You can feel very isolated and you are sometimes, not invited places, right? Because they don't know how your kid's going to act. And so you, you tend to just naturally kind of pull back from social situations. And I encourage all of my clients to start networking, start getting that community around them. Whether it's through your church or like Steel Magnolia Moms, a great organization that truly helps moms with kids with disabilities. And they're trying to get a dad program out there too, or any type of guardian, of someone with extreme disabilities so that they don't feel isolated. They don't feel alone. And that's a huge reason the Dup15Q Alliance has grown is because these families, they need somewhere to turn. They need somewhere to go to not feel so alone and to have people that they can use as a backup, use as a designation for a trustee. For a guardian, for a caregiver. Even the families that might have a lot of them they'll appoint a trust company which I do encourage because trust companies are great. They know how to manage these funds. They know what to file with social security. They just know they get it. And it's not as overwhelming as if, just some lay person who didn't know what it even means to be a trustee was named in this way. And then they're like what do I do? And they're a little nervous. So that's the hardest part is just trying to figure out who is the best person. That's what you're not going to get from Google or a form online. you know, The title of the podcast is the probate podcast, but this is really setting this person up and for people in making their estate plan helping them, helping those that come after them when they do pass away to be taken care of and to settle the estate. Absolutely. That's a very good point. When we draft a special needs trust for a disabled beneficiary and it's a standalone, What's important with that third party stand alone special needs trust. The reason I call it stand alone is it's we're trying to fund it now, whether that's just opening up a savings account and funding it minimally throughout the parents lifetime. It's because it's so much easier for beneficiary designation cards with, certain accounts. Like IRAs and life insurance policies to actually point those, assets that fall outside of probate, right? So those type of investment accounts and life insurance policies will point directly to that special needs trust, and it's immediate money, right? But then on the other side, if you do have assets that fall into your name, within the will both parents will, grandparents will, it's also very easy to name that standalone third party special needs trust instead of that beneficiary outright. So you don't feel like you're disinheriting a grandchild or a child. You're just naming it different, right? You're putting a different name. It's her special needs trust for the benefit of that child or grandchild instead of just her name outright. So the will can still cover that and that way she's not, or he's not inheriting funds that could kick her off disability. It's going straight into her trust. So that's why that special needs trust is so important. But then parents say then that's all I need is I just need the trust agreement. No, you still need the will, you know, the, the will still has to tie into that trust. And a lot of special needs planners out there, they also lose sleep at night. And so do I about beneficiary designation cards, titling it correctly is so important too. So I always tell my clients, when you go to update your beneficiary designation cards, reach back out to me. If you don't understand the language, I do a certificate of trust for them and show them how to title it. But, if for some reason, that financial institution isn't understanding how to title it, come back to me, ask me, don't let them change it. I need to review it so that it is properly, designated. So I would offer that extra step as well. So important, so I'm glad you're doing what you're doing. And I'm over here trying to do what I'm doing. And I'm talking as fast as I can to as many people as I can. And the platform is helping me to amplify my message to get your plans together, find the right person, don't use the online form to do that. It's so important that your specific situation is worked out. Someone who really knows what they talk about. Yes, absolutely. Sherri we hear a lot from clients I am here because I never want that to happen again. I don't want it to happen to my kids, so you hit the nail on the head. It's so important. So if you have, and I hope you do have a soon to be client that's listening right now... What are some things that she or he might need to have in mind before they reach out to you? A lot of the times people think that they have to have all of their assets in a very beautiful spreadsheet and listed and account number perfect and all that. Don't worry about any of that. Come to me first. We will go over your assets. Absolutely. But I don't need the nitty gritty detail to just have that first appointment with you. There are certain accounts and certain assets that I will have to dig deeper into once that comes out. But still a good idea to have a ballpark understanding of your estate value, ballpark understanding of where all of your accounts are, and also some designations in mind, I will help you go through all of those designations but start talking to people now. It's a hard conversation. But, I do have some clients coming to me and saying, why is anything on the intake form, because I don't know.. Like, okay, and then when they hear about what all entails, maybe because they don't understand truly what a trustee is or guardian. Or power of attorney, and then after I explain it, they say. Oh, I definitely have to talk to those people. Yes. You know... you probably should. You don't want to surprise anybody in your will or in your trust. You kind of want to prepare them a little bit first. Yes. So that's what I would encourage people to do is just open communication. I have to say that over and over to myself, too. And also people's lives change constantly, right? Divorce happens, death happens, accidents happen. So every few years, if some big life event has happened, go back and look at your estate plan. You don't want someone named as a guardian in there. That may now have a drinking problem. You want to get that name completely. And a lot of people think it's rude to say, who you don't want as a guardian. No, it's not rude. It's important. I put it who you don't want as a guardian as well. And I'm probably not in the majority there for attorneys, but you want it as clear as mud, so they say. Yes. Yeah, what is the question that you wish people would ask more often? As far as for a state plans. Like, why do I need a will? I don't have very many assets. Why do I need a will? Why can't I just write something down on a piece of paper? I like those questions. I'll be, I'll tell you why. And here's an example. And I give a real life example of why that didn't work or how that didn't work and all of the problems that trickled down after the fact. So just wish people would actually listen to someone in this industry and not someone on TikTok. Because I will say we have seen even professionals, financial advisors, CPAs. Trust companies. I've actually had a trust company send me a trust that was wrong. It would have had a lot of complications if I didn't correct it. So not saying that I've never made a mistake, but you have to go back and really look at that trust agreement. So I think it's, it's kind of the thought of well, that won't happen to me, or do I really need this? Or, won't it just all work out? So I do wish people would kind of just start openly talking about it. I know sometimes it's a taboo subject to talk about death. But we're all gonna die, right? And having an estate plan is not really for you. It's for your loved one. And getting people to start talking about that and asking more questions about what happens when I die that's important. I think, a little tiny silver lining of COVID is a lot of people started asking questions and a lot of people started really thinking about "wow. I just had someone pass away from a disease that we knew nothing about." Like, whoa, that, huge thing that happened in our world and our community. And so I would, just encourage, I guess that's that to answer your question. And that's what I would like people to talk about more and to ask questions more of, to attorneys that truly want to help and know and understand what they're going through For sure. The thing that I would add to that is then to talk to your family about it. I read a book called the Willing Wisdom and he talks about having a family meeting. I'd love to have him on the podcast one day.. But so you make your designations and you have your directives and all of that. And then you talk to your family, like on a yearly basis. So in our family we're doing it every January and then the kids at first, it was awkward. We have adult kids. It was awkward and I was nervous because I didn't even want to have a will, but I eventually came around... But we weren't even halfway through and my oldest daughter said thank you so much for calling this meeting because they're hearing why we made these designations and why we want these, why we're requesting these certain things are not wanting certain things. And It's not about this person making a difficult decision on her own free will. So everybody's on the same page. And it was a hard conversation, but I'm looking forward to the next 1. we had our 1st, 1 in January. We'll have our next 1 in January again. And they were like, you know what, we need to be thinking about having a will, so even though they're in their 30s it's something it's not too early for them. Yeah, so I.. Love that! I'm going to use that. I, I tend to when I have family where I know there's already some or a little bit of discord or a little bit of competition between siblings, because I'm hearing the parents talk about it and things. Thank you. I say, the best thing to do is talk to them about why you're designating who for what, right? We can put a no contest clause all day long in these wills, but still people can get their feelings hurt. And when they get their feelings hurt, they lash out. And then you could delay probate forever and it could just become complicated. But if you have now when you're alive and you have other people's input. It might really help. I actually have that similar scenario happen where all the kids wanted to be involved with the mother's planning and they all want to be on the phone. And it was very difficult to kind of get a little firm with them and say, look, I only have 1 client here. True. And I'm gonna speak with her only. Yeah. And then in whatever she talks with her family members after that is, is of course up to her. But you can't have outside influences. So it's so important to all be on the same page. I love that.
I'm gonna use that and tell:
family meeting every year, especially with kiddos that have disabilities, that, that's even more important. And I was thinking for the trustee too, for them to know why you're thinking this way or that way. And yeah wow, we have covered a lot. It has been so helpful. I just love this part of my job because I get to learn from people like you and get to help point other people in your direction. When I, I'm always listening for how I can help someone and Thank you. And, really careful about who I recommend them to. So, Carly, it's honestly a privilege to have you on the show today. And I so appreciate you taking the time out of your very busy schedule to be here and to help people that will be listening and doing those midnight searches on what to do, because they're stressed out and don't know where to go. So I really hope that you get some calls from this. Thank you for being here. Yes. Thank you so much, Sherri. The only thing I would add is, just for peace of mind for your listeners. If you didn't have a plan, or if there's not a plan in place. We can still help. There are safeguards that we can do. It's not the best case scenario, but it is something... there's first party trusts. I just wanted to add that because we didn't get to it. Oh, good. Good. But we can create first party trusts and still protect those funds and get them back on the benefit. And Gidgets very good at that. Just know that we kind of called the oops, the oops trust, but there are ways to rectify something that, wasn't thought out and planned. We're here to help if anyone is in that situation as well. I'm so glad you brought that up. Thank you for doing that. Yeah. So that's it for today's show. I told you it was going to be loads and loads of information for you. Reach out to Carly and Gidget and Stephen if you have any questions at Tyler and Maderer. How can people find you, Carly? Yes, of course. Our website www.tylermaderer.Com. That you can do an inquiry through our website. My email, Carly, carly@tmlegalgroup.com. com. I love email, I respond pretty quick. And then our, and then call our office. We have a great team that is ready to help. Good deal. All of that will be in the show notes as well, so you'll be able to just get the links on that. So that's it for today, Carly, again, thank you so much, and we will see you next time on the Probate Podcast.