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Special Needs Spotlight Webinar Series: Creating a Letter of Intent and a Life Plan

Special Needs Spotlight Webinar Series: Creating a Letter of Intent and a Life Plan

The law firm Norris McLaughlin, P.A., is pleased to present this Special Needs Spotlight Webinar Series. In the fifth session, “Creating a Letter of Intent and a Life Plan,” Abbey M. Horwitz, a Member of the firm, spoke with Elizabeth McKenna, CFP and Chartered Special Needs Consultant of Merrill Lynch Wealth Management, and Heidi Rome, internationally-recognized expert on the autism journey for mothers, Autism Mom Coach, and founder of Moms Spectrum Oasis.

Watch the recording here or read the transcript below:

What Is a Letter of Intent and a Life Plan?

Abbey Horwitz: Welcome, everyone, to Norris McLaughlin’s Special Needs Spotlight Webinar Series. My name is Abbey Horowitz; I’m a member at Norris McLaughlin in our Trust and Estate Planning Group. But, in addition to that, I’m also a parent of a 9-year-old daughter who has special needs. She has a severe form of epilepsy that has resulted in her having global developmental delays. So, in addition to focusing my practice on estate planning and administration, I do a lot of work with families with special needs to help them plan for their children as they, you know, progress in life. So, I would like to welcome everyone. This is the fourth webinar of our Special Needs Spotlight Series, and today we have two speakers with us who are going to discuss creating a letter of intent and a life plan. For those of you who don’t know what these two documents are, they are very interrelated. The letter of intent basically should describe your family and your child’s wishes for the future, gives pertinent information about your child’s medical needs history, interests and hobbies; and then the life plan focuses on the individual’s and the family’s choice of services, choice of living environment, and it’s tailored also to their wants and needs. So, we’re going to get into a lot more detail about what should be included in these documents for our loved ones. And then also, we’re going to talk about the reasons why people often don’t take the necessary steps to put these documents together or what’s holding people back from doing it.

As a special needs parent, even though, you know, I work in estate planning and administration, I’m just as guilty as the next person and not necessarily progressing. So, we have two great speakers with us today and I would just like to briefly introduce those. The first is Heidi Rome. Heidi is an internationally recognized expert on the autism journey for mothers. She’s recently launched, I think it’s her first book, entitled “You Just Have to Love Me: Mothering Instructions from My Autistic Child,” which became the number one new release bestseller in three categories on Amazon during the pre-order period before it was ever released. Heidi is also the autism mom coach and founder of Moms Spectrum Oasis. And we also have with us, Elizabeth McKenna. And for anyone who’s participated in our previous webinars, we’ve already met Beth. But for those of you who are joining us for the first time today, Beth is a Certified Financial Planner and Wealth Management Advisor at Merrill Lynch, and she’s also a chartered special-needs consultant.

So, throughout, we’ll be taking questions in the chat if anyone has, but I’m not sure if we’ll answer them during the presentation or we’ll wait until the end, but be sure to put your questions in the chat, and with that, I’m going to turn it over to Heidi.

Why Should I Create a Letter of Intent or a Life Plan?

Heidi Rome: Thank you so much, Abbey.  It’s really a pleasure and honor to be here.

So, you heard my introduction. I typically work with overwhelmed depleted parents who are so busy and consumed with caring for their special-needs child of any age that they are focusing on all the daily fires putting them out, and they forget to take care of themselves and to handle longer-term priorities. And so, I’m so delighted to be here today to talk about these really important topics. Now, let’s just step back a second. When I say the word “important,” and you heard Abbey describe the letter of intent and life planning, what was your reaction? Like how did that feel in your body when you hear that word “important” and life planning, letter of intent. Did it feel, you know, heavy or serious? And you probably responded, and the reaction was probably not, “Let’s go do it.” It might have been like, “OK fortify myself—Let me listen and do what I have to do.” Kind of endurance. So, I have a bit of a surprise for you. It doesn’t have to be that way. I hope you’re feeling good about this topic. That you actually can feel light about it and have fun and play with it because a letter of intent life plan is all about imagining and creating. You know, here’s a thought for you—I’m not the originator of it. Everything is created twice, first as an idea and then in the real world, and we use our bodies and minds to turn something that is just an idea into reality. And that process is universal–that’s what we do every day. The most mundane thing, this pen, began as an idea—hmm—blue thing that will write—and do whatever it took to turn that into reality. That is the opportunity that we have with a life plan—to dream. What is it that I want? What is it that I envision? What do I want to create? It’s also an opportunity to make your child, to whatever level of ability they have, a partner in that envisioning, in that imagining as the first step to actually creating it and making it happen. And you know when you want to get somewhere, you put your destination in the GPS and then abracadabra, here’s a path to take. When we envision, and we imagine that end result that we want, we put it in our GPS, and then the universe kind of works to make stuff happen, and we use other people along the way to make that happen. But we know where we want to go and we’re excited about the destination. So, this is your opportunity today—maybe you haven’t thought of it like that before. It’s also an opportunity for you to build your relationship with your child, asking them what’s in their heart—what do that want for themselves. You know, they may say, depending on their age, and you know obviously whatever is appropriate, but they’ll say, I want to have fun, I want to go bowling, I want to meet friends, I want to live with other people, I don’t want to live with other people, I want to be near animals, I don’t want to be near animals. Whatever they envision as—oh—it would be amazing to be doing this in my life every day. Okay, let’s write it down and begin to plan for that—to begin to create that roadmap forward—and we are now at the beginning of the roadmap and where do we want to go? And that’s the fun of this. So, you know, maybe you haven’t thought that this was fun before. And that might have held you back from moving forward, but if you stop and think about it, you know, there are a lot of things in life that we don’t think are fun and we do it anyway—we manage to do it, like taking out the garbage, right? No one wants to take out the garbage. But we know, we better take out the garbage because if we don’t, it’s going to smell—in a little bit of time, it’s going to be a mess and then we’ll say, I wish I had taken out the garbage. So, and then we have to deal with it anyway, right? The thing that we had been putting off, we have to deal with it.

So, I am one of you, I am an autism mom myself—and so everything I share with you is coming from my own experience, my own mistakes, and learning. And as Eleanor Roosevelt said, learn from the mistakes of others, you can’t live long enough to make them all yourself. And so, here I am, sharing with you my path to guide you. And this is what I do with clients is I guide them out of the fear and into the love and demonstrate how empowering that is, because I didn’t always come from that place, and I, too, got so focused on putting out the fires that I lost sight of the forest; and, you know, I was stuck in the trees. And what I need to share with you is an invitation to look at something difficult—you know, the garbage that has to be taken out. That in your huge love and concern for your child—the putting out all the fires which are in there—for their good—you actually may sometimes—and I know this was the case for me—be hurting your child without even knowing it. The last thing you wanted to—the last thing on the planet you wanted to you, you may be hurting your kid because you’re so busy putting out those fires and losing sight of the big picture. So, I’m going to give you an example because that was my experience.

My son Ethan is now 14. He has severe nonverbal autism and he has violent behaviors, and it was tough. It’s been a tough journey and I’ve learned a lot—he’s been my amazing teacher on it. And at his prior school—he’s now at a residential school for kids with autism—at his prior school they were, they were wonderful and one of the things they offer for the nonverbal kids was typed spelling to communicate, which is a form of facilitated communication. And it was through that means that Ethan was able to finally express his voice and demonstrate this profound intellect and spiritual connection that we had no idea about before. So, I had gone in this one day to work with Ethan on everyday things and his teacher had said to me: “So, what’s your schedule like with Ethan after school?” “So, I launch into it. Well, let’s see. He has PT twice a week, OT twice a week, speech therapy twice a week, yoga for the special child twice a week, were doing Tomatis listening therapy listening, brain gym, methyl B12 injections, Chinese medicine, homeopathy, color-coded laser acupressure treatments, we’re considering HBOT, we’re looking at stem cell transplantation.” I’m going on and on and on. In the meantime, I have to tell you, as I’m boring her with all the stuff we’ve been doing, I’m thinking to myself what a good mother—I’m patting myself on the back. Look at all this stuff I’m doing to attack autism. Fix this—right? I’m amazing. And as I’m going through my litany of stuff, Ethan reaches over to the keyboard—and we kind of laugh because he was never in a big hurry to get to work—he reaches over and he typed, “I’m tired.” Well, I felt the air leave my body. My heart sank. I said, Oh my God. I’ve been hurting him. I thought I’m running around and dragging him to all this stuff, and it was helping him but, look at this, he’s exhausted. And I remembered that, for example, his physical therapist had said to me: “You know, sometimes when Ethan is in the middle of a basketball game or doing an obstacle course, he’ll sometimes lie down on the court and closes his eyes.”

And, of course, the reaction to that is, come on, that’s work avoidance—come on Ethan, back to work. Let’s go. Up, Up, Up. Back, Back, Back.  I’m thinking, Oh my God, he’s exhausted. And it hit me like a ton of bricks. I share this with you because I want you to see, as I realized in that moment, I had been making it about me. Am I a good mother? I hadn’t stepped back to say, what does he need? What is really in his best interest? Is it all of this? In my desperation to do the right thing and fix, was I counterproductive? Because think about, what other message was I sending to him as I dragged him every waking moment after school and on weekends to fix him—was you’re broken—and Mommy’s really unhappy that you’re broken. I’m putting that on my kid—and all of this was a wake-up call for me to realize there has to be a better more empowering way that truly is about meeting his needs and guiding him forward without it being my agenda.

What is really at stake? What really should I be doing? I was so focused on his immediate physical well-being, honestly, other stuff, back burner. The financial planning? Whatever. I was so focused on getting him to the next therapy and the next, and the next, and the next, that these other critically important issues were not in the foreground for me at that point. And I had nobody to mirror back to me, and this is another big point that is part of this: we all need to surround ourselves with team and people who support us and can mirror back—hold on, is that what you should be doing right now? You know, and one of the things that is really important—and again, I work with people that look at this, and this is an opportunity for you too—is ask for help. Now, you may say, Heidi, I ask for help and I already know that and I do ask, and sometimes I get help, and often I don’t get help, or I don’t get what I really need. And I would say to you, you know, there’s kind of a secret missing piece to that which most people don’t think of. Yes, ask for help. But the missing piece is, ask for help from the right people; from the right source; the people who have the expertise to help you; the desire to help you; the time to help you; the resources to help you; the bandwidth to help you; that’s who you need to ask for help from, because if you ask for help from the most convenient person, your neighbor, your mother, your friend, they may want to help you with all their hearts, but maybe they can’t. And if you asked for help from someone who can’t, you’re not going to get what you need, and you’re really setting yourself up potentially, as I did, for disappointment and failure. So, it’s really important, keep in mind if something feels overwhelming—wait, can I ask for help?

So, my friend, every time you put off a decision and procrastinate, you’re actually making a decision. Not to decide is to decide. That is the definition of a decision, is to cut off other options. If you don’t do something, you’re cutting off what would have come from that decision—and that’s not to scare you, it’s just to say, we’re all human, we all do it, we’re all going to be putting stuff off. So, surround yourself with allies and people who will move you through when it’s hard—and you’re going to do the same for them because you’ll see things when you’re calm and neutral that they need to be doing. So, it’s about giving yourself the same loving compassion that you give your special needs child every day. Can you give that to yourself, so that you can begin to breathe again and move forward and move out of the fear and into the love?

And so, I’m going to give you three tips for you to make this whole processing financial planning, processing a letter of intent, life plan development, and everything else that follows. All of life that follows. I’m going to give you three steps, three tips that I hope will help you move forward to chip away at life’s big stuff and view it with a lighter heart so it doesn’t feel quite so big.

Tip #1: Focus on Love, Not Fear

Choose to focus on your love, not your fear, because remember your motivation to move forward on your child’s behalf is love—right? It’s not the fear. Love will energize you. Fear will exhaust you. You know, when your newborn baby cried in the middle of the night that he’s hungry—he or she is hungry—you went in and you fed him—right? You didn’t procrastinate—you didn’t say, maybe I’ll feed him tomorrow or, you know, if I feel like it or well, maybe I won’t feed him right. So, I won’t go do it. No. Even if you were scared you went in anyway and you did it, and to the best of your ability—and you might of even have thought: Oh…I’m exhausted right now but I get to be with my little baby and demonstrate how much I love this little kid that God has given me—like wow!  So, when you act from love you can do anything—right? It’s the fear that is the hole in the bucket. That is what we want to plug up or at least transform into fuel to move us forward. So, the same idea now, your special-needs child needs you to be the adult the caregiver, the champion who has his or her best interest at heart, to stand up and be who he or she needs you to be even if it’s uncomfortable or you would rather go back to sleep. You know, not even beginning to plan for the future is hurting your special-needs child and is failing to meet his needs as surely as if you did not go into the crying baby to feed him. So remember why you even felt called to be on this call today, is your love for your child. That’s what brought you here, you did what you had to do to be here today on this call—you could have been doing anything else. You’re here today from that love. In this moment, you’re here now, and that’s amazing. And when you stand in the love you realize how much stronger the love is to move you forward, you know, as you begin to plan and create every aspect of the journey, including the financial needs planning—because the Japanese have a proverb about this: When is the best time to plant a tree? The proverb is, the best time is 20 years ago or now. So, we’re not 20 years ago—you child may not have even been born 20 years ago, but even if they were, we’re not 20 years ago, we’re here now. Now is the time to act.

Tip #2: Ask for Help

I mentioned it before because it’s so important: Ask for help from the right people because another lousy consequence of being stuck in the fear is that we freeze and feel isolated—right? As if we’re the only ones in the world who have these challenges and, you know, we’re the only ones not doing what we should be doing—right? That’s where we live in the would of, should of, could of thing, which is, again, so paralyzing and so counterproductive. When you’re in fear, you’ve actually activated, and you probably know this, the primitive part of the brain, the amygdala, which is fear—I’m in danger right now, there’s a tiger about to pounce—and when you’re in fear your brain is trying to protect you—and we’ve heard of fight or flight—your options become limited.  It’s fight or flight, freeze or appease. So, we have four options open. And also, your brain isolates you because it’s you and the tiger—you don’t see anything else. So, what we need to do when we ask for help is breathe deeply. Literally take a deep breath. Let’s do it in this moment, you’ll feel it—and what you just did was signal your brain that you’re safe. Breath will do that. Breath will tell you when you’re in danger, when you’re doing the shallow breathing, and it will also signal your body, you’re safe. And when you signal the brain and the body that you’re safe, you actually calm the amygdala. This is the brain science of all this, and you’re activating the prefrontal lobes, the prefrontal cortex of the brain, literally activated the blood and the oxygen flow in—that part of the brain is where your letter of intent and life planning are right there because that’s the part of the brain that opens up to community, that opens up to creativity, compassion, possibility. What do I want to create? What do I envision? What is possible? Who can help me? What friends are with me to help me do this, who have my back? Who can guide me, because none of us is as smart as all of us? So, that is what is possible when we ask for help and know we’re safe, and we know we’re not alone—that’s what we can begin to create what we want to be creating for our kids. So, you are asking for help, so you’re moving from fear to love, you’re asking for help from the right people.

Tip #3: Take Baby Steps

And my third and final tip for you today, take baby steps—just begin. Rome wasn’t built in a day.  Fear tends to have us inflate a challenge and make it feel way bigger than it maybe is. You know, it feels too big, too much, can’t do it, too difficult, too complicated, not for me now—okay, maybe later, maybe later. That’s the fear making it feel big. No one is telling you that you have to set up a special needs trust in the next 10 minutes—no one’s telling you that. Or open an ABLE account or write your letter of intent—I’m timing you. No. No. No one’s doing that. You can plan that; you can think about it; begin to draft it; put it in phases; what has to happen now? First, short-term, middle-term, medium term, long term—you can put a plan together of when I’m going to write this; what timeframe;10 minutes; a day; what do I want in 20 years; what do I want next week—right? It’s all the same process. Baby steps—chunk it down—make it smaller.  The longest journey begins with a single step. So, really important to chunking it down, be kind and compassionate to yourself, monitor your messages to yourself, keep them positive and inspirational because your thoughts, when you go into the—all that spinning and the spiraling too much, too much, too much—look at that—whose voice is that, and ask is that really true. Notice the voices in your head that are telling you it’s too much, don’t do it now. Bring in the other voices. Be kind and compassionate with yourself, as you are with your child. When your child is feeling overwhelmed and scared, do you say “snap out of it” or do you say, “I’m with you. Let’s talk about it. What’s going on?” And you rest, you wait—and then when everyone’s ready, let’s pick it up again because remember, if you’re feeling tired and overwhelmed, there is a distinction between stopping to rest and quitting. You don’t have to quit, just rest, and feel what I need right now; and if I’m in fear, what is the next loving step I can take for myself or for my child to move forward. So, I’m going to sum it up for that—you know, Beth is speaking after me. I just want to remind you that when you follow these tips, you focus on your love, not your fear, you ask for help from the right people, you take baby steps, you’re kind and calm to yourself. Do that for any challenge that you’re kind of procrastinating with. You know, no one can exercise for you—right? No one can eat for you. Ultimately, we all have to live our own lives, and do what we need to do to thrive—and it’s always our choice to choose to be a victim of circumstance or the hero in the face of circumstance. And I know what your response is, and I work with people on the practicality of what does it practically look like to come from love right now. What do I specifically need to do right now? What decision, what action do I need to make right now in the face of a challenge? So, I get how hard it is. So, if you would like to reach out and talk with me more about this, by all means, I’m here for you—I would love to speak with you.

I’m going to pass the baton now to Beth.

Elizabeth McKenna: You know, I’ll take it from here.

Heidi Rome: You’ll take it from here—thank you, Beth.

How Do I Create a Letter of Intent or a Life Plan?

Elizabeth McKenna: And thanks so much. And Heidi, what an incredible job of showing us the why, of explaining the why of why these documents are so important. Now it’s my job to take over and tell you how. OK. So, just need the next slide. I’m going to first focus on the letter of intent. This is an important companion to the special needs trust. It is in fact, in my opinion, essential. No one knows your child better than you do. Therefore, you need to impart this information in case someone needs to step in and replace—you—the irreplaceable parent and be able to know what to do. It ensures that your trustee or your successor guardian knows your child’s functional abilities, routines, interests, and likes and dislikes. Consider for a moment, how much you just take for granted that you do every day for your child. Who else would know that but you? This is why this document is so important. Okay, it includes essential information about doctors, therapists, medication, services, and resources; again, all the important information that you likely keep in your head at all times, I know I do for my son Michael, but that others would be absolutely lost without. It communicates knowledge that only you know. In my case—I’ll just give an example—my daughter is Michael’s co-guardian. She lives nearby and knows her brother well—loves him so much—but would really not have much of a clue about his day-to-day care. Why would she unless she needs to know, and that’s where the letter of intent comes in. Finally, it should include your hopes and dreams for your child’s future. You want to do this because the letter of intent is really forming the foundation of the life plan, as we will discuss later.

So, the components of the letter of intent are first of all the family history. So this needs to be very detailed actually. You need to include where and when you were born, raised and married, information about your siblings, your parents, other relatives, and special friends of your child. You could add things like memories of when your child was born and other anecdotes about family and friends that would make this feel about memories and feelings about your child. You should also include a brief summary about your child’s life to date. You need to include resources in the general area that are important to your child. Now, these could be places of worship, employment agencies, schools, local nonprofits that provide socialization opportunities for your child, and people who are important; and you also should include the current residential status of your child, as well as the expected future needs. The education information, both current and potential, very important to include. You really need to include past records, current employment, specialty teachers, future interests and goals of your child, special interests and talents are very important, extracurricular activities—like my son loves Special Olympics basketball, that’s got to be on there for mine—as well as types of educational emphasis, like vocational versus academic, communication, etc. You need to include employment guidance, such as work your child enjoys, perhaps sheltered workshops that your son or daughter may attend, activity centers, and companies that may provide employment opportunities in your area are also important to include.  Finally, important social, behavioral, and personal relationships. Please include relatives, special friends, teachers, and care providers. Again, how would anyone who takes over know who to contact without this? You need to provide telephone numbers, addresses, and emails, if available.

You want to provide social and recreational activities enjoyed by your child. For instance, I included Special Olympics for my child, and he loves other sports, he also loves to watch sports, so I need to include that. Dance, music, movies. You might want to include whether your child can or cannot handle spending money, that’s an important aspect of your child’s life. It’s a really good idea to include a typical day in the life of your child. Just go through what that day might look like conversationally, including favorite foods, music, books, TV shows, and routines. You do want to absolutely include detailed medical information. So, at a minimum, current doctors, therapists, clinics, hospitals, current medications, and therapy routines. You need to explain how the current medications are given and what purpose, and you want to include other medications that perhaps you’ve tried, or the doctors have tried and haven’t worked in the past, because you don’t want to revisit those things. Finally, and probably most importantly, you want to have a final expression of love, hope, and desires for your child. Next slide.

Going to give you a few tips: First of all, do not feel at all inhibited—speak your mind. This is an incredibly powerful and personal document and you need to get all your feelings, all the information, plus all your feelings about your child in it. I advise you to use a clear conversational voice and avoid legalese. This is not a legal document, ok, but, I do recommend highly that you update it regularly along with your legal documents and your financial plan. So, legal documents at the minimum should be reviewed every 3 to 5 years; even sooner if something substantial happens. And your financial plan, I update my financial plans with my families at least once a year. And I absolutely recommend that you keep the letter of intent along with your legal documents. Clip it right to your will, your special needs trust, all the legal documents, and keep it all in one place, please.

Now, so as I mentioned, that was the start, that’s the foundation. Now I’m going to talk about creating the life plan for your child. This is also called a person-centered service plan. This concept originated in the 1970s. So, prior to the 1970s, many social service plans tend to be service-centered rather than person-centered, which failed to provide choice to individuals with special needs. It was kind of like trying to fit a square peg in a round hole—they just wanted everybody fit into the same types of services and it just wasn’t working out, and it was realized that that was not working, and they moved on to person-centered planning. It focuses on giving individuals with special needs and their families the power to choose services, living environments, etc., that are tailored to their wants and needs. And always the person with special needs and their wants and desires should be heard and should be paramount. It’s based on identifying and accomplishing goals, building relationships, reducing risks, and creating a full life for people with disabilities.  The key questions—the key three questions should be—what are the person’s strengths, abilities, and gifts? What is important to the person now?  And what does the person want in the future—what are their dreams? Next slide, please.

So, the components: As I mentioned, the letter of intent is at the foundation. But the letter of intent by itself tends to be more of a, look at the past, and what’s going on in the present. The life plan is really more about expanding upon that into your child’s future. The full plan develops what the individual and family want his or her life to look like, including education opportunities, work desires, recreation, time spent with friends and family, vacation preferences, and housing preferences just for a start. Again, this is an incredibly personal plan and it should include everything in there that’s important to your child. Again, I can’t say it enough, the individual with special needs needs to be at the center and participate as much as possible—and the other important players can include friends, trustees, successor guardians, and care management and providers, which really, they can provide a tremendous amount of insight for your child. I recommend and will facilitate for my families’ planning sessions that can and should include the person with disabilities and all loved ones who can participate—and I like to see my families having these gatherings relatively frequently, probably every year to two years at the very least.

So, one of the reasons why this is so important is because families are actually required to fill out a person-centered planning tool or PCPT. This is the part of the process of accessing services at age 21 plus through the Division of Developmental Disabilities or DDD. So actually, developing your child’s life plan now will prepare for this requirement. The PCPT is used by the support coordinator. This person is either assigned by DDD or you can actually choose one yourself.  So, this person gathers the information for the individualized support plan that will direct services through the DDD. Next slide, please.

So, I provided some of the questions on the PCPT because I thought it might give you some insight as to what potentially would be good to have on the life plan. So, these are:

  • What do you and others like and admire about you?
  • Who is in your circle of supporters?
  • What is important to you?
  • What are your long-term hopes and dreams?
  • What do others need to do to support you?
  • What are characteristics of the people who support you best?
  • What do caregivers need to know about how you communicate?

So, these are used as pathways for employment. The PCPT is used by the Division of Developmental Disabilities to create employment goals for your child, among other things. So, it’s very important.

So finally, I have included some more resources. A copy of the person-centered planning tool can be found on the Arc of New Jersey Planning for Adult Life website, which is You can search the website for the person-centered planning tool which is available to be downloaded. So, you just scroll down to the bottom of that page and there’s a search box and just put person-centered planning tool in it and it will pop up for you.  And, upon request, today via email, I will send examples of the letter of intent in the life plan, which I provide to my families.

So finally, thank you all so much for joining us today and for considering and preparing to take these essential steps in supporting your loved one with special needs. We are all so happy that we are here today to help you and support you. You can reach out to Abbey Horwitz at Norris McLaughlin, myself, or Heidi Rome for any additional help. And now we can entertain questions from the chat. I see some questions in there, but I can’t see what they are. So, waiting for those. OK, so I believe this was already answered, but this presentation is being recorded, so we will have that available to you if you need. OK finally, thank you again. We are so happy we could be here for you today and, just checking.

Additional Questions

Abbey Horwitz: There’s a question now.

Elizabeth McKenna: Yeah, I see it.

Abbey Horwitz: Would my brother-in-law be the one appointed for Zack? I don’t know—from Diane Smith. I don’t know if someone knows Diane Smith. Do one of you know? I think that would be for a special needs trust. That’s a personal decision, Diane, that you would make in coordination with your family, as to who would be appointed—are you talking about for the trustee or guardian, I’m not sure? But that would be, you know, something for a guardian. That’s a family decision and, you know, guardian, once a special person becomes 18, is actually a court-appointed position. So, there’s an application and petition to the court. So, there’s a process that would have to go through. Would the guardian need to be in the letter? I think you would want to express your intentions and your wishes as to who would be the guardian’s yes.

Elizabeth McKenna: Absolutely.

Abbey Horwitz: And that can also be something that would be included in your will from an estate planning perspective—your intent as to who it would be.

Elizabeth McKenna: Absolutely. And all that information should definitely be on the letter of intent along with contact information as well—absolutely should be there.

Abbey Horwitz: Would you write the letter of intent? Yes. We each would and give it to the lawyer.

Elizabeth McKenna: You can give it to the lawyer or simply just clip it to your documents that you have in your possession—either, or both would be absolutely acceptable. As far as who should write it. It really should be you because it’s coming from you—it’s coming from your heart and from your wishes and desires for your child. So, it’s extremely personal. What I can do is provide guidance, and I do for my clients—but it absolutely needs to be written in your voice.

Abbey Horwitz: The special needs trust, that’s something different because that would be a legal document. That is something you should work on in conjunction with your lawyer because there are certain requirements in there to protect. Oh, you have one already. Okay, great. But, in general, because you want to make sure that your loved one is protected and their assets are protected in the future, and that they’re eligible for the various benefits that they are entitled to.

And do we have any more questions? We can stick around for a few more minutes if there are going to be other questions.

Elizabeth McKenna: Happy to.

Abbey Horwitz: If not, I do definitely want to thank everyone for joining us today. Again, as Beth mentioned, all of our email addresses are on the screen, so please feel free to reach out to any one of us—we’re happy to help or discuss anything that was talked about today. This webinar was recorded, so you can certainly come to the Norris McLaughlin website to access it, and then also, we are going to be having some future webinars. I, unfortunately, don’t have the dates in front of me but keep an eye out, I’m sure we’ll be receiving email notifications about them and we’ll be posting that on social media as well, about some upcoming webinars in this series that we are hosting. So, we hope to see you there.

If you have any questions about this post or any other related matters, feel free to email Abbey at or Chair of the Norris McLaughlin Elder Care & Special Needs Law Practice Group, Shana Siegel, at Please join us for the next session in our Special Needs Spotlight Series. To save the date for future segments, please click here.