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Welcome to personal finance for
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long-term investors, where we believe
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Benjamin Franklin's advice that an
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investment in knowledge pays the best
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interest both in finances and in your
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life. Every episode teaches you personal
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finance and long-term investing in
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simple terms. Now, here's your host,
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Jesse Kramer. Welcome to Personal
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Finance for Long-Term Investors, episode
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119. My name is Jesse Kramer. By day, I
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work at a fiduciary wealth management
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firm helping clients nationwide. You can
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learn more at bestinterest.blog.
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blog/work. The link is in the show
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notes. And by night, I write the best
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interest blog and I host this podcast. I
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put out a weekly email newsletter. All
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of which help busy professionals and
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retirees avoid mistakes and grow their
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wealth by simplifying investing, taxes,
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and retirement planning. And some cool
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news, I'm now officially going to three
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episodes a month of the podcast. Three
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episodes a month. I asked you all via my
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weekly newsletter to fill out a poll.
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Uh, by the way, if you haven't
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subscribed to the newsletter, you can go
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join 4,000 subscribers all for free by
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signing up at bestinterest.blog. And the
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consensus of that poll was clear. More
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frequent episodes would be great, but
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the episode length cannot go any longer.
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So, I'm going to honor those wishes and
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send out three episodes a month, but not
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bombard you with super duper long
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episodes anymore. So, every month, my
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plan is to have one ask me anything AMA
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episode because you guys are giving me
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amazing feedback on those. I'm going to
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have one deep dive episode about a
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single uh specific topic and that's what
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we're doing today. And then I'll have
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one episode featuring an expert guest.
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So today's deep dive episode is going to
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be on the topic of special needs
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planning. So So here's my ask. Maybe
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special needs planning, you know,
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planning for a special needs child,
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having a special needs child, doesn't
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apply to you, doesn't apply to your
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family, but I would bet you know someone
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who it does apply to. And maybe, just
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maybe, this episode will introduce that
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person and that family to just one or
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two ideas that will make their burden
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lighter, that will help them make a
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smart financial or legal decision on
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behalf of their special needs child.
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It'll help them sleep at night a little
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bit better knowing that their child will
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be taken care of. So, my ask to you is
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to share this episode with that person
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in your life and see if it makes their
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life a little bit better. But before we
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start, we do have a review of the week
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from the Joel 11. Joel gives a five-st
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star review saying, "Explaining the
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complex situation." I love this podcast.
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Jesse explains the complex world of
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money in a way my kids can even
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understand. I highly recommend it. Joel,
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thank you for that kind review. You can
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shoot me an email to jesse@
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bestinterest.blog and I'll get you
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hooked up with a supersoft podcast
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t-shirt. So, now on to special needs
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planning. I want to start the episode
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with a little story, a personal story.
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In September of this year, September of
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2025, our daughter had what I would call
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her first serious sickness of her life.
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you know, definitely more than just a
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cold, more than just a day or two. She
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had a fever on or off for for 5 days.
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Really didn't get back up to full speed
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for seven or eight days. She was cranky
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and crying way more than normal during
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the days, seeking our comfort. She was
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definitely in pain from some of the the
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symptoms. And at only 15 months old, she
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couldn't really express to us exactly
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what was wrong, how we could make it
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better. She would cry on and off during
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her sleep during the night. And she's
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back to normal now, full strength. It's
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awesome. But truly, for the first time
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as a parent, this little part of my
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heart, you know, broke for her. Cuz
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here's this helpless baby through no
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fault of her own. She's in suffering.
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She's in pain. All she wants is to feel
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better, sleep through the nights, and
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live her normal baby life. And if I
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could, I would snap my fingers and give
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that to her. But I couldn't. All we
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could do was monitor her temperature,
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give her baby motin, try to read into
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her cries as best we could and give her
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what she wanted, and then wait and see
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if it it got better, see if she got
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better. is the type of week that made me
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so thankful when she did recover back to
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normal and my mind began to think about
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the many parents out there who have to
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deal with things on a regular basis far
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worse than just a week-long illness. So
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that's why today I want to focus on not
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only the emotional and human stakes, but
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also the financial stakes for when a
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child or another dependent has a
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disability or some sort of chronic
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illness because those circumstances
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require we plan not only for the parents
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lifetimes, which is maybe what we're
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mostly thinking about here as listeners,
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but we also have to think for our
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child's full lifetime, not just when
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they're in the household, not just the
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529 college plan. We have to think of
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our child's lifetime long beyond that.
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Another quick story. I I appreciate that
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as my dad drove me to Rochester to drop
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me off for my freshman year of college
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at the U of Melora to any U of our
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listeners out there. We had a talk about
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this. You know, at the time that was
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going to be the first and biggest step
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towards me dropping off of the parental
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budget. Well, when someone has a child
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with a disability or a chronic disease,
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they might never be able to fall off the
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parental budget. But then there's so
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much more so much more meaningful stuff
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and and so many more anxietyinducing
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questions. you know, how will my child
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be cared for after I'm gone, after I
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die? How do I balance our personal needs
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today with tomorrow's needs and with the
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child's needs? So, that's why we're
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going to dive deep on the topic of
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financial planning and a little bit of
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life planning for parents of special
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needs children and and special needs
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adults. And we'll start with some life
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planning thoughts, then dive into the
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unique financial challenges that special
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needs families face. And then we'll get
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into some key planning tools like
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government benefits, special needs
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trusts, ABLE accounts, and insurance
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planning. We'll get into broader family
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financial ideas like retirement planning
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for the parents, sibling considerations
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and estate planning. And we'll end with
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some emotional and practical
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considerations and and some action
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steps. So, first let's just talk about
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the life aspect. Now, I'm not a special
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needs expert. I'm not a therapist, not a
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doctor, just a guy online who reads and
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listens to what other people have to
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say. So, I don't want to get into this
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lane too much because it's really not my
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lane. But here's what some smart people
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actually in that lane have to say. They
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say things like, "Raising a child with
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special needs doesn't mean managing
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appointments or insurance forms. It
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means building a sustainable life both
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for the children and for you as their
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parents." First, it's about building a
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support system. You can't do it alone.
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Parents who thrive on this journey, they
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learn to lean on other people, extended
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family, friends, mentors, especially
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other parents walking a similar path.
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Sometimes the most valuable support
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isn't advice, but someone who simply
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understands what the daily ups and downs
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are. We all know those aspects of our
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own lives where we meet someone on a
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similar path and we say, "Oh yeah, you
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get it, right? You can empathize with
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me. You get what I'm going through. We
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feel each other's journey." And being a
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special needs parent is a prime example
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of that. Second, communication matters
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even more than it normally matters.
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That's communication between spouses,
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between siblings, between parents and
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teachers and doctors and therapists.
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Everyone needs to be on the same page.
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Misunderstandings can cause a lot of
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frustration, but clear, proactive
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communication helps make life smoother
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again, both for the child and for the
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child's family. Third, we can think
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about routines and structure. Children
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in general, but especially children with
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special needs, often thrive when life is
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predictable. It doesn't necessarily have
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to mean rigid schedules, but it does
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mean creating rhythms that provide
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comfort and reduce stress. Structure can
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be a a safe foundation. You know,
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freeing up the rest of your time and
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energy and the rest of your children's
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time and energy for some sort of growth
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and learning and progress. Not to
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mention, as the parent, structure helps
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you get through your days and your weeks
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and months. The fourth thing to think
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about is care for the caregivers
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themselves. It might be the most
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overlooked aspect. In my reading online,
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this is where many parents feel a real
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internal struggle. They know how much
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they're sacrificing for the sake of
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their children. And it's a sacrifice
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that they want to make. Something they
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would do 100 out of 100 times, but it
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doesn't make it any easier. And
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everyone's well-being matters. And the
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burnout is real. You can't pour from an
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empty cup, as they say. So building in
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some sort of rest time, whether it's 5
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minutes of quiet in the morning or a
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full afternoon off, makes the entire
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family stronger. And then fifth, plan
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for the long term, not financially, but
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emotionally. Every parent of a special
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needs child wonders, "What will happen
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when I'm no longer here?" While
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financial planning is one part of that
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answer, and we'll spend most of today's
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episode on that part of the
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conversation, equally important is
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making sure your child has a community,
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a network of caring people, a road map
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of their preferences and routines,
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almost as if it's a guide book about
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your children for the future. Outside of
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the finances, outside of the legal
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questions, how will your child's life
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look when you're gone? And the last bit
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of advice on the life planning side is
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to celebrate the small wins. You know,
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life planning isn't just about
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mitigating challenges and reducing risk
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and then thinking about insurance and
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and estate planning. It's about noticing
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progress, you know, embracing the little
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things, the joy, acknowledging the
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resilience that your family builds every
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single day. And from the reading, it it
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seems like those moments, both big and
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small, are what carry families like this
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forward. But now, let's transition to
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some financial topics. Some unique
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financial challenges of special needs
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families. For most families, financial
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planning already feels like putting
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together a puzzle. In some cases, you
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have all the pieces and now it's just
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about putting those pieces together. In
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other cases, most of the pieces are
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missing or unknown. So, good luck
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solving that puzzle. You know, the first
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job is just assembling all the pieces
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themselves. And the pieces are, you
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know, retirement, kids college, a
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mortgage, healthcare, insurance, taxes,
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estate planning, minimizing debts, and
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actually loving life along the way,
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ideally. But now, imagine we add one
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more piece to that puzzle. Only this one
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doesn't really seem to fit well at all.
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It's more unpredictable. It somehow
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keeps on changing shape. And that's the
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reality for most families raising
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children with with special needs. It's
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not just that it's more expensive. It's
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just a fundamentally different financial
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landscape. So to talk about some of
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those unique challenges, the first one
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is higher ongoing costs. It's kind of
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the obvious one. It's more money out the
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door. Special needs families often face
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expenses far beyond what traditional
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financial planning assumes. therapies,
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specialized medical care, extra and and
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expensive prescriptions, adaptive
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equipment, individualized education
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programs, transportation, inhome care,
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full-time aids even. And those costs
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don't come with an end date often,
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right? For many parents, fully healthy
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and and kind of neurotypical children
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can you can budget around milestones.
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Daycare until age five, school, college
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for four years, maybe you're buying your
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kid a car at 16, something like that.
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Christmas gifts every year. I know that
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my children will eat more as teenagers
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and then they'll ask for more
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discretionary spending along the way.
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But the whole point is that we can
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budget for our kids based on their age,
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based on their stage in life. And we
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know at some point that budget probably
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has an end date. But for special needs
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parents, they don't really get clean
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budget horizons. The needs persist
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sometimes for decades, often far into
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adulthood. And even within categories
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like health care, the baseline is simply
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different. Many families worry about the
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occasional ER visit or or braces. But
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special needs families think about
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weekly therapy, annual surgeries,
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expensive medications not fully covered
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by insurance. So all of this creates a
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higher and more persistent drag on their
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cash flow. Not a one-time hurdle, but a
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marathon of higher ongoing costs. The
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second unique financial challenge is
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unpredictability, uncertainty. Most
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children grow and learn, gain
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independence in their late teens, early
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20s. And again, we know by 18 my
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daughter will be in college and by 22
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she'll be out and working. And it makes
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planning at least somewhat linear. But
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for a special needs child, you know,
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will they be able to live independently?
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Will they ever work? Will they always
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require daily care? Will their health
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improve and stabilize or will it
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deteriorate? And those unknowns force
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families to plan kind of on multiple
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timelines all at once. It's something we
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all need to do. Planning multiple
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timelines is something we all need to do
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because we don't know, say, how
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investment markets or tax codes might
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change in the future. But with a special
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needs family, imagine where, you know,
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one scenario where the child needs
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lifelong support, one where they achieve
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semi-independence, one where they end up
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thriving on their own. Those are very
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different scenarios, very different
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timelines. There's also unpredictability
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of public support. You know, will public
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government programs like Medicaid or
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SSI, supplementary security income,
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local educational resources, will they
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still exist in their current form in 20
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years? No one really knows. Parents have
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to wonder how much of a safety net will
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be there when they're gone. And that
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uncertainty isn't just stressful. It
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actually changes the math, too. It leads
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families to save more than they
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otherwise would because undersshooting
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your goal has catastrophic consequences
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to your kids. And then there's the the
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parental balancing act, we'll call it.
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You know, parents know they can't afford
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to only think about their special needs
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child. They still have to think about
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themselves. They have to think about
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other kids if they have other kids. It's
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where some guilt enters the equation.
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How can I save for my own retirement
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when my child might need care forever?
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Is it fair to help our special needs
00:11:53
child at the cost of burdening our other
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children with college debt? Right? Those
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are deeply emotional questions. And
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financially speaking, the challenge is
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prioritization. Every family faces
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trade-offs between retirement, college
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savings, present- day spending. But for
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special needs families, the stakes are
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if they neglect their retirement, they
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risk becoming financially dependent on
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their other children later in life. And
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that's a burden no parent wants to
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place. But if they short change their
00:12:17
other kids, they risk resentment or
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family fractures down the road or
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they're just making life harder for
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their other kids than they want. So, you
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know, traditional advice says you you
00:12:25
take care of your own oxygen mask first,
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right? That's kind of the the metaphor.
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And the most common example is that you
00:12:30
should save for your own retirement
00:12:32
before you help your children with
00:12:33
college savings. But when you have a
00:12:35
child who may never be financially
00:12:37
independent, that advice feels certainly
00:12:39
inadequate, if not even callous. you
00:12:41
know, the balancing act for a special
00:12:43
needs family. It's one of the most
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unique and and heart-wrenching
00:12:46
challenges that those families face. The
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last layer here on these unique
00:12:50
challenges is the layer of time. Caring
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for a special needs child isn't just a
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financial commitment. There's a serious
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time commitment and parents often have
00:12:58
to reduce their hours at work to attend
00:13:01
therapies or provide daily care. Career
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advancement opportunities are no longer
00:13:05
there. They get missed. Business travel
00:13:07
probably feels impossible. The time that
00:13:09
other families might use to, I don't
00:13:10
know, grind for a promotion, go on the
00:13:13
extra family trip, start some sort of
00:13:15
neighborhood side hustle, that time
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probably isn't available for a special
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needs family. In a dual inome household,
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one parent might be able to step back,
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leaving the family with only one steady
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paycheck. That changes everything about
00:13:26
saving and investing in long-term
00:13:27
financial planning. If a special needs
00:13:29
family is a a dual income household,
00:13:31
maybe one parent can step back, but that
00:13:33
leaves the family with only one steady
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paycheck, which changes everything about
00:13:37
saving, about investing, about long-term
00:13:39
financial planning. And that time cost,
00:13:41
if you will, that opportunity cost of of
00:13:43
time, it's not really acknowledged in
00:13:45
spreadsheets. It's hard to measure, but
00:13:47
it's very real. Lost income potential,
00:13:49
can be one of the largest financial hits
00:13:51
that any special needs family face, I
00:13:53
would I would wager. And unlike direct
00:13:55
expenses where you can maybe cut or
00:13:57
negotiate or get a tax rebate or or
00:14:00
apply for insurance, time is very finite
00:14:02
and it's very hard to get it back. Money
00:14:04
is never just money, right? Money is
00:14:05
it's not just about the money in in
00:14:07
anyone situation, but particularly I
00:14:10
think in these special needs situations.
00:14:11
Money is security. Money is love. Money
00:14:14
is peace of mind. Money is time. And
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that makes financial decisions feel
00:14:18
heavier, more charged, maybe even
00:14:20
paralyzing at time because the lack of
00:14:22
money, right? It equates to the lack of
00:14:24
security for your child, the lack of
00:14:26
love for your child, the lack of peace
00:14:28
of mind for your child. It's not just
00:14:29
money. It's very, very emotional. So,
00:14:32
what does this mean for financial
00:14:33
planning? Well, it means traditional
00:14:34
advice like, you know, save 15% of your
00:14:37
income, invest in a 529, buy term life
00:14:39
insurance, and invest the difference.
00:14:41
That that advice might not fit for a
00:14:43
special needs family. Instead,
00:14:44
customized, flexible, long-term plans
00:14:46
that account for their unique realities.
00:14:49
That's what special needs families need.
00:14:51
Here's a quick ad, and then we'll get
00:14:52
back to the show. You probably know that
00:14:54
I love listener inspired content, but
00:14:56
this is my first listener inspired
00:14:58
advertisement. Frank asked me in short,
00:15:00
Jesse, is there a best time to start
00:15:02
working with you as a client? And the
00:15:03
short answer is yes. There are two ideal
00:15:05
times. One is at the beginning of a new
00:15:07
year for probably some pretty obvious
00:15:09
reasons, but the second one is right
00:15:10
about now, September and October. It's
00:15:13
the perfect time for year-end tax
00:15:14
planning to ensure you find the correct
00:15:16
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00:15:18
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00:15:20
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00:15:22
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00:15:24
whatever other tax dials we can turn for
00:15:26
you. Working backward from the December
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31st tax deadline, the time to start
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those initial conversations is right
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now, August, September, maybe into early
00:15:35
October. You want to give yourself and
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us enough runway to make sure we get
00:15:39
this right for you. So, if you're
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interested in starting a conversation
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with me and my colleagues, you can go to
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bestinterest.blog/work
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and fill out the form there. Again,
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that's on my blog on the work with Jesse
00:15:50
page. The address is
00:15:52
bestinterest.blog/work
00:15:54
and fill out the form. So, we're going
00:15:56
to dive deep right now into some of
00:15:57
those realities, including special needs
00:15:59
trusts, ABLE accounts, government
00:16:01
benefit programs, and life insurance.
00:16:03
Starting with special needs trusts,
00:16:05
every special needs family needs to
00:16:07
consider a special needs trust. Many
00:16:09
government programs, two examples would
00:16:10
be Medicaid and SSI, supplementary
00:16:13
security income, which we'll talk about
00:16:14
in a few minutes, they set strict limits
00:16:16
on a beneficiary's assets and income.
00:16:19
So, if your child directly inherits
00:16:21
money or receives financial gifts in
00:16:23
their name, those programs, Medicaid and
00:16:26
SSI, and your child's eligibility for
00:16:28
those programs, you know, Medicaid and
00:16:30
SSI, and your child's eligibility for
00:16:32
those programs could be jeopardized. So,
00:16:35
that's where a special needs trust comes
00:16:36
in. Instead of leaving assets directly
00:16:39
to your child, you would leave your
00:16:41
assets to the trust or other people in
00:16:44
life would leave their assets to the
00:16:45
trust. The trust then pays for your
00:16:48
child's supplemental needs, therapies,
00:16:50
travel, home modifications, educations,
00:16:52
whatever it might be. But meanwhile,
00:16:54
because the assets are not in your
00:16:56
child's name, but instead in the trust's
00:16:57
name, your child will remain eligible
00:17:00
for government benefits. You can think
00:17:02
of it as this uh financial Chinese wall
00:17:04
firewall, right? Divider. The trust
00:17:06
holds the resources, but it's structured
00:17:08
so that they don't count against
00:17:09
government eligibility. There are two
00:17:11
main flavors of special needs trust,
00:17:13
third party and first party. Third party
00:17:15
special needs trust is funded by
00:17:17
parents, grandparents, other people,
00:17:19
usually set up through estate plans and
00:17:21
very flexible and on the most common
00:17:23
special needs trust. A first party
00:17:25
special needs trust is funded with the
00:17:27
child's own assets. maybe like an
00:17:29
inheritance that the child received that
00:17:31
was accidentally left directly to them
00:17:33
or maybe a legal settlement from some
00:17:36
sort of action that that the child was
00:17:37
involved in. So, first party special
00:17:39
needs trusts have more restrictions.
00:17:41
They usually include a Medicaid payback
00:17:43
provision if the beneficiary, if the
00:17:45
special needs child were to die. Without
00:17:47
any sort of special needs trust, some
00:17:49
sort of well-meaning gift or inheritance
00:17:51
might unintentionally knock your child
00:17:52
off of their essential benefits. But
00:17:55
with a trust, you keep those doors open.
00:17:57
And as with all trusts, you name a
00:17:59
trustee. Going back to previous episodes
00:18:01
and blog posts about the basics of a
00:18:03
trust, every single trust out there has
00:18:05
three important roles involved in it. So
00:18:07
just a little background for your
00:18:08
listeners, three important roles. The
00:18:10
grtor who creates the trust, the
00:18:12
beneficiary who benefits from the trust,
00:18:14
and the trustee. And the trustee is the
00:18:16
person who has a fiduciary obligation to
00:18:18
act out the grtor's wishes for the
00:18:20
trust. In some cases, the same person
00:18:22
can play multiple roles, multiple of
00:18:24
those three roles. But in the case of a
00:18:26
special needs trust, it's hugely
00:18:28
important that the a trusted trustee is
00:18:30
in place to enact the grtor's wishes.
00:18:33
Again, usually that would be like the
00:18:34
parents wishes for the benefit of the
00:18:37
beneficiary who would be the special
00:18:38
needs child. One quick note, uh the
00:18:40
trustee can be all the usual suspects,
00:18:42
another family member, a close friend, a
00:18:45
professional trustee like a bank or a
00:18:46
trust company or law firm. But
00:18:48
specifically for special needs trusts, a
00:18:51
nonprofit poolled trust might be the
00:18:54
right or the best answer. A a nonprofit
00:18:56
poolled trustee. So this would be a a
00:18:58
nonprofit that manages multiple special
00:19:01
needs trusts, pooling assets for
00:19:03
investment purposes, but keeping
00:19:05
separate accounts for each beneficiary.
00:19:07
It usually results in lower costs than a
00:19:09
professional trustee, but with a staff
00:19:11
experienced specifically in disability
00:19:14
related issues. They're often again
00:19:16
because it's a nonprofit, they're often
00:19:17
missiondriven, very familiar with the
00:19:18
nuances of government programs. Now, the
00:19:21
cons would be uh, you know, less
00:19:23
flexibility in investment or
00:19:24
distribution decisions, probably less
00:19:26
personalization than a family member or
00:19:28
a close friend would provide, but still
00:19:30
a nonprofit pool trust is really worth
00:19:32
looking into if you're not familiar with
00:19:34
it yet. And that's for a special needs
00:19:35
trust. But moving on from special needs
00:19:37
trust, uh we now have another key tool,
00:19:39
the ABLE account, ABLE, which is short
00:19:42
for achieving a better life experience,
00:19:44
ABLE account. And it's a really nice
00:19:46
kind of analogy in the financial
00:19:48
planning world. We can think of ABLE
00:19:49
accounts as the direct cousins of 529
00:19:52
college savings plans. They allow
00:19:54
families to set aside money up to
00:19:55
$19,000 a year in 2025, plus potentially
00:19:58
a work-related contribution into a tax
00:20:01
advantage account for a child with
00:20:03
disabilities. the money grows inside
00:20:04
that account taxfree and as long as the
00:20:06
withdrawals are used for a qualified
00:20:08
disability expense which is you know a
00:20:10
broad category that includes housing,
00:20:12
education, healthcare, transportation,
00:20:14
well as long as it's used for one of
00:20:16
those qualified expenses then the money
00:20:18
comes out taxfree too. So again very
00:20:19
similar to the way a 529 works and
00:20:22
another big win is that ABLE accounts
00:20:24
don't count against SSI or Medicaid
00:20:27
eligibility. You can save up to $100,000
00:20:30
currently inside an ABLE account without
00:20:32
jeopardizing eligibility for SSI. And
00:20:35
starting in 2025, funds from a qualified
00:20:38
529 college savings plan can be
00:20:41
permanently rolled over into an ABLE
00:20:43
account. So this would come up in a
00:20:44
situation where maybe you have multiple
00:20:46
children, one of the kids has special
00:20:48
needs. Your kids who do end up going to
00:20:50
college, they end up with extra money in
00:20:52
the 529. You can roll the money over
00:20:54
into an ABLE account. It also might come
00:20:56
up in a situation where a child who you
00:20:58
have been saving for a 529 for at some
00:21:01
point in their childhood they become
00:21:03
disabled or permanently disabled in some
00:21:04
way. They probably are not going to go
00:21:06
to college in the future, but now they
00:21:08
could really use that money in an ABLE
00:21:10
account. You can permanently roll money
00:21:12
from a 529 into an ABLE account. There
00:21:15
are some caveats or things to know, some
00:21:17
nuances about ABLE accounts. To qualify
00:21:19
for having an ABLED account, the
00:21:21
disability, your child's disability must
00:21:23
have been diagnosed before age 26,
00:21:25
although I believe that's soon expanding
00:21:27
now to 46 thanks to new legislation. So,
00:21:30
that would be a big shift. And unlike a
00:21:32
third party trust, an ABLE account is
00:21:34
subject to a a Medicaid payback when the
00:21:38
beneficiary if and when the beneficiary
00:21:39
passes away. But in the right
00:21:41
circumstances, ABLE accounts provide
00:21:43
flexibility. They provide some control,
00:21:45
and they definitely provide tax
00:21:46
efficiency. They're very handy for
00:21:48
day-to-day expenses of of a special
00:21:50
needs child, whereas a trust might be
00:21:52
more geared towards kind of larger
00:21:54
long-term support. Next, let's dive into
00:21:56
the many government benefits programs.
00:21:58
Special needs families, unfortunately,
00:22:00
need to learn a bit of an alphabet soup.
00:22:02
There's SSI, there's SSDI, Medicaid,
00:22:04
Medicare, SNAP, and and some more. And
00:22:07
each program has its quirks, but broadly
00:22:09
SSI, supplemental security income,
00:22:12
provides a uh a monthly income for
00:22:14
individuals with limited means who are
00:22:15
disabled, blind, or elderly. Uh for many
00:22:18
special needs children transitioning
00:22:19
into adulthood, SSI becomes their core,
00:22:22
their main income stream. SSDI,
00:22:26
Social Security disability insurance, is
00:22:28
different. It's tied to work history,
00:22:30
but disabled adult children can
00:22:31
sometimes qualify based on their
00:22:33
parents' work record. That's important.
00:22:35
It's a good wrinkle, an important
00:22:36
wrinkle to plan for. Medicaid and
00:22:39
Medicare. In case I've never said this
00:22:41
before, maybe you've never heard this
00:22:42
before. In case you confuse Medicaid and
00:22:45
Medicare, Medicaid rhymes with paid
00:22:48
because it's means-based. It's based on
00:22:50
money. Well, Medicare rhymes with hair,
00:22:53
as in it's meant for people with no hair
00:22:55
or white hair. It's for people who are
00:22:57
65 plus. Medicaid rhymes with paid.
00:23:00
Medicare rhymes with hair. A little
00:23:01
pneummonic that might help you out.
00:23:03
Medicaid often provides health care
00:23:05
coverage and critically long-term
00:23:07
support services for special needs
00:23:08
families. It often includes inhome care,
00:23:11
day programs, community support, some
00:23:13
things that private insurance might not
00:23:15
cover, rarely covers. In fact, Medicare
00:23:17
does eventually enter a picture if a
00:23:20
child qualifies through SSDI. So, that's
00:23:22
important. It can also apply after they
00:23:25
reach age 65, but sometimes Medicare can
00:23:27
enter the picture if the child qualifies
00:23:29
through SSDI. And then SNAP, I mentioned
00:23:32
that before. Other programs in general,
00:23:34
SNAP is for food assistance, but there
00:23:35
are state level services, maybe even
00:23:37
county and city level services, other
00:23:39
programs. We'll get into a little bit of
00:23:41
that later. The planning challenge isn't
00:23:43
just knowing that these programs exist.
00:23:45
A big part of it is just structuring the
00:23:46
family's finances so that their
00:23:48
eligibility is protected while still
00:23:50
providing for a good quality of life. So
00:23:52
that's why trusts, able accounts,
00:23:54
careful gifting strategies do matter so
00:23:56
much and and matter even more for a
00:23:58
special needs family. Let's talk about
00:24:00
life insurance. And really, life
00:24:01
insurance is for many parents, life
00:24:03
insurance is a safety net. You know, if
00:24:04
I die, my family can stay afloat. But
00:24:06
for special needs families, it's much
00:24:08
more than that. It's often a funding
00:24:10
mechanism for their child's lifelong
00:24:12
care. To be more specific here, so I'll
00:24:15
use my family as example. For my family,
00:24:17
our term life insurance policies are
00:24:19
essentially designed to decay down to
00:24:22
zero benefit as my children graduate
00:24:24
college and proceed on with their own
00:24:26
adult lives. It's like it's not perfect,
00:24:27
but that's the general idea is that
00:24:29
there will come a time in the future,
00:24:31
20, 25 years from now, depending on how
00:24:33
many kids we have, where we won't have
00:24:35
any more life insurance because our kids
00:24:37
will be gone. They'll be out of the
00:24:38
nest. They'll be on their own. And the
00:24:40
question of if I die, will my family be
00:24:42
screwed by that time, 20 or 25 years
00:24:45
from now, I'm hoping the answer is no.
00:24:47
If I die, my family will still be okay.
00:24:49
In the interim, though, it's really nice
00:24:51
to have term life insurance. But for a
00:24:53
special needs parent, their life
00:24:54
insurance might stay in force forever.
00:24:57
If your child might never be financially
00:24:59
independent, then your estate plan needs
00:25:01
some sort of pool of assets specifically
00:25:04
earmarked for their support. And since
00:25:06
few parents have millions of dollars
00:25:07
sitting around, life insurance can be
00:25:09
something that fills that gap. A key
00:25:12
though is matching the insurance to the
00:25:14
overall financial plan. So this is a
00:25:17
place where some sort of permanent life
00:25:18
insurance policy, you know, whole life
00:25:20
policy ensures that coverage doesn't
00:25:22
expire at age 70 or age 80. This is a
00:25:25
case where term life insurance may
00:25:27
simply be too temporary. The policy's
00:25:29
death benefit should flow into a special
00:25:31
needs trust. Usually, I mean, consult a
00:25:33
lawyer to be sure or a CFP, but usually
00:25:36
that's how it you want it to work. The
00:25:38
death benefit does not flow directly to
00:25:40
the child. So this again avoids any sort
00:25:42
of benefits eligibility issues that we
00:25:44
talked about earlier. Parents should
00:25:46
periodically revisit the amount of
00:25:47
coverage as their costs and their
00:25:49
circumstances change. And now life
00:25:51
insurance in this context, it's not just
00:25:53
leaving a windfall. It's ensuring
00:25:54
continuity of care. Permanent life
00:25:57
policies, as we've talked about here on
00:25:58
the podcast many times before, they
00:26:00
usually stink. They're usually not that
00:26:02
great. But they are important here for
00:26:04
special needs situations. They really
00:26:05
are. So, how do we reconcile those two
00:26:08
facts? the facts that for most of us a
00:26:11
whole life a universal life a permanent
00:26:13
life insurance policy is not something
00:26:14
we want and yet in this case they're
00:26:17
very special and and important. So let's
00:26:19
start with the critique because it's
00:26:21
valid. Permanent life insurance comes
00:26:22
with high costs, much higher costs, much
00:26:25
higher premiums than term life
00:26:26
insurance. It comes with complexity.
00:26:28
Permanent life insurance are often much
00:26:29
more hard to understand. The cash value
00:26:32
component is often oversold. Permanent
00:26:34
life insurance policies usually come
00:26:35
with underperformance as an investment.
00:26:37
If you're thinking of it as an
00:26:38
investment, if it's sold to you as an
00:26:40
investment, they typically lag behind
00:26:42
simple lowcost index funds. And
00:26:44
permanent life policies are usually
00:26:45
salesdriven. Too often, permanent life
00:26:47
gets it gets pushed because of the
00:26:49
commissions, the high commissions, not
00:26:51
because it's the right tool for the
00:26:53
client, for the customer. And that's why
00:26:54
for most families, the math is so clear.
00:26:56
Simply buy an inexpensive term coverage,
00:26:59
not permanent, but a term coverage
00:27:01
policy to protect against early death
00:27:03
and then invest the difference in
00:27:04
premiums elsewhere. But for special
00:27:07
needs families, things are different.
00:27:08
Families raising a child with lifelong
00:27:10
support, they have a planning problem
00:27:12
that by term and invest the difference
00:27:13
simply doesn't solve their planning
00:27:15
problem. The permanent life policy
00:27:17
provides certainty. You know that no
00:27:19
matter what, there will be a benefit for
00:27:21
the special needs trust. That's hard to
00:27:23
replicate with investments alone given
00:27:25
market volatility and longevity risks.
00:27:27
So permanent life is usually a poor
00:27:29
choice as an investment, but in special
00:27:31
needs planning, it is not an investment.
00:27:33
It's a funding mechanism for the special
00:27:35
needs trust. It's not about cash value
00:27:37
growth. It's not about beating the
00:27:39
market. It's about creating a guarantee,
00:27:41
a guaranteed pool of assets at the
00:27:43
precise moment when the parents are no
00:27:45
longer there to provide for their child.
00:27:47
For most people, permanent life
00:27:49
insurance is a hammer that's looking for
00:27:51
a nail. And we don't want to be that
00:27:52
nail. But for special needs families,
00:27:54
they are that perfect nail. And
00:27:56
permanent life insurance is the perfect
00:27:58
tool that matches up for the job. Of
00:28:00
course, just because it's a useful tool
00:28:02
doesn't mean that all permanent policies
00:28:04
are created equal. Families in this
00:28:06
circumstance should still shop very
00:28:08
carefully, work with a a
00:28:09
fiduciary-minded planner, not a
00:28:11
commissioned salesperson with a quota.
00:28:13
They should keep it simple. Often a uh a
00:28:15
straightforward whole life policy with a
00:28:17
right death benefit is better than a
00:28:19
complex universal policy with all the
00:28:21
bells and whistles. The insurance policy
00:28:23
should integrate with the trust. The
00:28:24
policy's beneficiary should be the
00:28:26
special needs trust, not the child
00:28:27
directly. And then we want to rightsize
00:28:30
the coverage. You know, we don't need $5
00:28:32
million of coverage if $1 million is
00:28:35
realistically going to meet the child's
00:28:37
needs. The next topic I want to talk
00:28:38
about is guardianship and legal
00:28:40
planning. Money is only part of the
00:28:42
equation in today's conversation. We
00:28:44
actually need to ask about who will care
00:28:45
for your child when you're gone. And
00:28:47
that's where guardianship or
00:28:49
conservatorship or powers of attorney
00:28:51
come in. Parents need to decide who will
00:28:53
make medical, legal, and financial
00:28:54
decisions for their child if the child
00:28:57
can't make those decisions
00:28:58
independently. And it's not just a legal
00:29:00
hoop. It's really about peace of mind.
00:29:02
Knowing that someone trustworthy will
00:29:03
advocate for your child in hospitals, in
00:29:05
schools, in courtrooms. That legal
00:29:07
planning can also cover letters of
00:29:09
intent. These are non-binding documents
00:29:11
that capture a parent's wishes, capture
00:29:13
maybe a parent's insights about the
00:29:15
child. Again, it's not a legal document,
00:29:17
but you can think of it as a manual for
00:29:19
future caregivers that are full of
00:29:20
details that probably wouldn't go into
00:29:23
legal form anyway. And so, one important
00:29:25
question, we've painted some pictures
00:29:26
here today where a guardian or a power
00:29:28
of attorney or a trustee or other
00:29:30
similar roles are involved. And the
00:29:32
logical question might be, should one
00:29:35
single person fill all of these roles to
00:29:37
make life simpler or are there negative
00:29:40
consequences for doing that? Some of the
00:29:42
pros for having one person handle
00:29:43
everything. We have simplicity, right?
00:29:45
We have one decision maker. We have
00:29:47
fewer cooks in the kitchen. We have
00:29:49
consistency. The same values and
00:29:51
judgment guide both financial and
00:29:53
personal decisions. And then we have
00:29:55
efficiency. There's less risk of a
00:29:56
dispute between different parties
00:29:58
because the guardian says X, but the
00:30:01
trustee of a special needs trust says Y.
00:30:03
But then there are certainly cons of
00:30:05
having one person handle everything.
00:30:07
First might just be the overload. It's a
00:30:09
really big responsibility. caregiving,
00:30:11
financial management, legal decisions.
00:30:13
It's understandable how it could burn
00:30:14
someone out. Possibly a bigger one than
00:30:17
that is skill mismatch. There's no
00:30:19
correlation between someone being an
00:30:20
excellent caregiver and being an
00:30:22
excellent money manager and vice versa.
00:30:24
So, I think it's important to have the
00:30:26
right people in the right roles with the
00:30:28
right skills. And then last is just some
00:30:30
sort of system of checks and balances.
00:30:32
Putting too much power, for lack of a
00:30:34
better term, in one person increases the
00:30:35
risk of mistakes, of mismanagement in
00:30:38
some unfortunate but rare cases, but
00:30:40
still real cases, some some cases of
00:30:42
abuse. And my opinion from some
00:30:44
professional experience, but more so
00:30:46
from speaking with and reading with
00:30:47
other expert opinions, is to not
00:30:50
overload one person. Guardianship and
00:30:53
caregiving should usually be separate
00:30:55
from financial and trust management. a
00:30:58
mix of personal connection and
00:31:00
professional oversight tends to work
00:31:01
best. So, I'm in favor of getting uh
00:31:05
different people for different roles,
00:31:07
you know, after your death for different
00:31:09
caregiving, guardianship, powers of
00:31:11
attorney, and trustee like roles. It's
00:31:13
important to get different people
00:31:14
involved so that we get the right skills
00:31:16
involved, we have the right checks and
00:31:18
balances so that no one person becomes
00:31:20
completely overloaded. Next, we can talk
00:31:22
about some of the financial planning
00:31:24
fundamentals. the fundamentals that
00:31:26
everyone needs to think about, but we
00:31:27
can talk about how these fundamentals
00:31:29
change for special needs families
00:31:31
because it is it's easy to focus and
00:31:32
important to focus on the special tools
00:31:34
like special needs trusts and ABLE
00:31:36
accounts, government programs, but
00:31:38
forget that special needs families also
00:31:40
need to do all of the basics, but that
00:31:42
those basics look different for them.
00:31:44
For example, emergency funds should
00:31:46
probably be bigger than average because
00:31:48
unexpected expenses are more common.
00:31:50
Retirement planning is still very
00:31:52
important. It's just simply harder.
00:31:53
Parents need to protect their own
00:31:54
financial futures, but they have a lot
00:31:56
less discretionary income to save for
00:31:58
the long run. Estate planning, as we've
00:32:00
already talked about, you know, wills
00:32:02
and beneficiary designations and titling
00:32:04
of accounts needs to be done really
00:32:06
carefully to avoid accidentally leaving
00:32:08
assets directly to the child. Something
00:32:10
that's probably a boilerplate simple
00:32:12
task for most families, like naming a
00:32:14
beneficiary, might become a we should
00:32:17
talk to a professional to make sure we
00:32:18
don't screw this up for a special needs
00:32:20
family. And then there's just simply
00:32:21
that guardianship, power of attorney,
00:32:24
trustee aspect to estate planning that
00:32:26
we just talked about. Tax planning is a
00:32:28
little different, too. It usually
00:32:29
involves a lot of medical expense
00:32:31
deductions, dependent care credits, the
00:32:34
interplay of trusts and ABLE
00:32:36
distributions with family taxes. So, in
00:32:39
other words, it's it's really not just
00:32:40
about all the unique tools that special
00:32:42
needs families have at their disposal or
00:32:44
need to be aware of. It's also about
00:32:46
weaving those tools into the rest of
00:32:48
their quote unquote normal financial
00:32:50
foundation, which actually isn't that
00:32:52
normal at all. Here's a quick ad and
00:32:55
then we'll get back to the show. Serious
00:32:58
question. Why do podcasters constantly
00:33:00
ask for ratings and reviews? Yes, they
00:33:03
do help highlight our shows to new
00:33:04
listeners. They help strangers find us
00:33:06
on Apple Podcast and Spotify. It's
00:33:08
totally true and a good reason to ask
00:33:10
for ratings and reviews. But I have
00:33:12
something more important, at least more
00:33:14
important to me. I want to know if you
00:33:16
like this stuff. I want to know if you
00:33:18
like my podcast episodes, my monologues,
00:33:21
my guests, the information I share with
00:33:22
you and the stories I tell. I want to
00:33:24
improve and make your listening more
00:33:26
enjoyable in the process. So yeah, I
00:33:28
would love to read your reviews. And
00:33:30
sure, if you throw a rating in there,
00:33:32
too, that's great. If you like what I'm
00:33:34
doing, please share it with me. It's
00:33:36
such a great feeling to read your
00:33:38
feedback. I'd love to read your review
00:33:40
or see a rating on Apple Podcast or
00:33:43
Spotify. Thank you. Let's talk about
00:33:45
some community and professional
00:33:46
resources. You know, special needs
00:33:48
planning is complex and and few families
00:33:51
should can do it alone. And thankfully,
00:33:53
there is. There's a web of resources
00:33:55
available. Some we've already talked
00:33:56
about, some we haven't yet. And that web
00:33:58
of resources goes from federal level
00:34:00
Washington DC down to your county
00:34:02
clerk's office. On the federal level,
00:34:04
we've already talked about the big
00:34:06
three. SSI, supplemental security
00:34:08
income. For many families, that is the
00:34:10
foundation. That's the monthly cash
00:34:11
payments to children and adults with
00:34:13
disabilities who do have to meet strict
00:34:15
financial and medical eligibility
00:34:17
standards. And that's again those
00:34:18
standards, that eligibility, that's why
00:34:21
the special needs trusts and titling of
00:34:24
accounts is so important. The dollar
00:34:26
amounts for SSI aren't necessarily
00:34:28
life-changing, but SSI eligibility
00:34:31
usually opens doors to other benefits,
00:34:33
including Medicaid in most states. So
00:34:36
that's why it's like SSI, getting SSI is
00:34:38
is kind of that first step. Again, even
00:34:40
though the money itself might not be
00:34:42
life-changing, it's an open door to
00:34:44
applying to other benefits. Medicaid, as
00:34:46
I just mentioned, Medicaid is the
00:34:48
primary health care safety net for
00:34:50
people with disabilities. Beyond doctor
00:34:52
visits and hospital coverage, it pays
00:34:53
for long-term supports like inhome care
00:34:55
and therapies and specialized equipment.
00:34:58
In most states, SSI eligibility
00:35:00
automatically triggers Medicaid. And
00:35:02
then we already talked about SSDI,
00:35:04
Social Security disability insurance
00:35:06
program tied to work history. Adults
00:35:08
with disabilities though sometimes could
00:35:10
qualify through a parents record once
00:35:12
the parent retires or passes away. An
00:35:15
SSDI also brings access to Medicare
00:35:17
after a waiting period which can be an
00:35:19
important supplement to Medicaid. So
00:35:22
those are the big three on the federal
00:35:23
level. SSI, SSDI, and Medicaid. Together
00:35:27
those programs are the the backbone you
00:35:29
can say of federal support. But what
00:35:31
about on the state level? On the state
00:35:32
level, we have uh waiverss and services.
00:35:35
Every state layers its own programs on
00:35:38
top of the federal framework. They often
00:35:40
come through Medicaid waivers, sometimes
00:35:42
called home and community based
00:35:45
services, HCBS, home and community based
00:35:47
services. Waivers fund services that
00:35:49
allow individuals with disabilities to
00:35:51
live at home or in the community rather
00:35:53
than in institutions. This might include
00:35:55
respit care for parents, home
00:35:57
modifications, job training, and
00:35:59
supported living arrangements. I will
00:36:01
say that the details seem to vary widely
00:36:03
and wildly by state. So eligibility and
00:36:06
weight lists and the actual services
00:36:08
that are offered can look very
00:36:10
different, but almost every state has
00:36:11
some version of these programs and they
00:36:13
are actually often the most impactful
00:36:16
benefits available. And then we can
00:36:18
drill down even further to the county,
00:36:19
the local, sometimes regional agencies
00:36:22
that provide hands-on services that
00:36:24
might include early intervention
00:36:25
programs for young children, often
00:36:27
coordinated through local school
00:36:28
districts. I mean, a very simple one,
00:36:30
uh, I don't even know technically
00:36:32
actually if this falls under the
00:36:33
disability framework, but like our
00:36:35
daughter is excellent in communicating
00:36:37
in every single way except for actually
00:36:40
forming syllables and words. Right now,
00:36:42
she's only 15 months, 16 months old,
00:36:44
right? But she can point, she can she
00:36:46
tells you exactly what kind of food she
00:36:47
wants, but she's just not using her
00:36:49
words. Not that all 16-month-olds have
00:36:52
left words, but either way, through our
00:36:54
county, we were able to take her to a
00:36:56
speech pathologist just to make sure
00:36:58
that there wasn't any sort of deeper
00:37:00
problem. And there wasn't, thankfully.
00:37:01
But like that's an early intervention
00:37:02
program. That's pretty important to
00:37:04
have. Also on the county level, we have
00:37:06
developmental disability boards which
00:37:07
connect families to case managers and
00:37:10
other resources. transportation services
00:37:12
for individuals who can't drive, respbit
00:37:14
programs that give parents and
00:37:16
caregivers a much needed break. And then
00:37:18
on top of, you know, government county
00:37:19
resources, there are local nonprofits
00:37:21
and advocacy groups and faith
00:37:23
communities that often play a big role.
00:37:25
Think of things like United Way or
00:37:27
Autism Speaks or the National Down
00:37:29
Syndrome Society. You know, a little
00:37:31
aside here in Rochester, I'm a member of
00:37:33
the Rochester Rotary Group and our our
00:37:35
flagship service mission is to operate
00:37:37
and fund a place called Sunshine Camp
00:37:39
just south of Rochester. It's a fully
00:37:41
accessible 150 acre residential summer
00:37:44
camp dedicated though to children and
00:37:46
young adults. I think the older kids
00:37:48
tend to be college age with physical or
00:37:51
developmental disabilities. It offers
00:37:53
them an inclusive summer camp experience
00:37:56
one week at a time. It has no barrier to
00:37:58
participation. The children attend for
00:38:00
free thanks to community support, thanks
00:38:02
to Rotarian support. And one of the more
00:38:04
touching things that I remember hearing
00:38:06
when I first learned about Sunshine
00:38:07
Camp, it was a parent of one of the kids
00:38:10
who said, "I know my child's having the
00:38:12
time of their life with other kids just
00:38:13
like them. And as much as I love caring
00:38:16
for my child, I get to have a week off,
00:38:18
too." And I think that's a perfect
00:38:20
example of a nonprofit with a dedicated
00:38:22
mission helping special needs families.
00:38:24
And those types of resources are
00:38:26
hopefully available in your region, too,
00:38:28
wherever you are. Those groups help
00:38:29
families navigate the maze and and
00:38:31
provide grants for equipment. simply
00:38:33
creating a community for parents who
00:38:35
need support. I've heard a lot of good
00:38:36
feedback too from special needs families
00:38:38
just about the role of different
00:38:39
professionals in their lives, right?
00:38:41
Special needs attorneys, CFPs, social
00:38:43
workers, healthcare advocates to
00:38:45
translate the jargon, to coordinate
00:38:48
applications, to ensure that benefits
00:38:49
are structured properly. They might be
00:38:52
mostly minor interactions, but they're
00:38:54
important interactions nonetheless. And
00:38:55
if we pull that all together, you know,
00:38:57
and kind of wrap up this episode,
00:38:59
special needs planning is not just about
00:39:00
finding one magic solution, but instead
00:39:03
it's about these these many different
00:39:05
layers of support as we've talked about.
00:39:07
You know, trusts for long-term financial
00:39:09
protection, ABLE accounts for flexible
00:39:11
spending, government benefits truly as
00:39:13
the backbone of your resources. life
00:39:15
insurance as a funding source for a
00:39:17
trust, guardianship and legal planning
00:39:19
for decision-making, fundamentals,
00:39:21
making sure that the family has its own
00:39:22
fundamentals taken care of, too. Your
00:39:24
retirement as parents, your tax
00:39:26
planning, your estate work, and then
00:39:28
some community and professional support
00:39:29
to tie it all together. When combined,
00:39:32
they create a framework that lets
00:39:33
parents of special needs families
00:39:35
breathe just a little bit easier.
00:39:37
>> Thanks for tuning in to this episode of
00:39:39
Personal Finance for Long-Term
00:39:41
Investors. If you have a question for
00:39:43
Jesse to answer on a future episode,
00:39:45
send him an email over at his blog, The
00:39:47
Bestinest. His email address is
00:39:49
00:39:52
Again, that's jessevestinterest.blog.
00:39:55
Did you enjoy the show? Subscribe, rate,
00:39:58
and review the podcast wherever you
00:39:59
listen. This helps others find the show
00:40:02
and invest in knowledge themselves. And
00:40:04
we really appreciate it. We'll catch you
00:40:06
on the next episode of Personal Finance
00:40:08
for Long-Term Investors. Personal
00:40:11
Finance for Long-Term Investors is a
00:40:13
personal podcast meant for education and
00:40:15
entertainment. It should not be taken as
00:40:17
financial advice and it's not
00:40:19
prescriptive of your financial
00:40:20
situation.
