How to build a team, protect essential benefits, and create a plan that gives your family confidence about the future
By Corey Vertich, Uhler Vertich White Advisors
When I sit down with a parent whose child has special needs, the conversation almost always starts in the same place:
What does a beautiful, secure life look like for your son or daughter when you are no longer the one guiding their day-to-day care?
Who will know that your daughter gets anxious in crowds? Who will make sure your son takes his medication at the right time, with food, the way he needs it? Who will advocate for their needs, manage their care, and fiercely protect the things that bring them joy?
That’s what special needs financial planning is really about. Not just setting aside money or establishing a trust, but building a system of care that holds together for decades. Here at UVW, walking alongside families in our community through these milestones is a privilege we’ve shared for a very long time.
More Than a Legal Document
It’s easy to think of special needs planning as just a legal checkbox. You set up a trust, fund it, and cross it off your list. But a trust, while important, is only one piece of a much larger, more meaningful picture. And while many firms focus solely on building the financial structure, our goal is to help you build the beautiful life that sits inside it.
Years ago, a devoted father in his eighties came to see us. He had no other family to lean on, and he simply needed to know that his adult daughter, who had an intellectual disability, would be safe and happy when he was gone. Most of all, he wanted her to stay in the home she grew up in and continue living the life he and his late wife had built for her.
Today, his daughter is thriving in her sixties and living the exact life her father dreamed of. She is still in her beloved home, travels on vacations to Disney World with a wonderful companion, and is surrounded by a dedicated team who ensures she is healthy, active, and deeply connected to her community.
Her father’s love lived on through his planning, gifting her a joyful life that has continued to flourish. We share this because we know the worries you carry can feel incredibly isolating. We want you to know that we see you, we understand, and we have witnessed the beautiful possibilities that open up when the right circle of care is in place.
Related: Click here to read “Estate Planning Conversations, Part 1: What Impact Do You Want to Have?”
What Does Special Needs Financial Planning Entail?
When we work with families on special needs financial planning, we don’t hand you a document and wish you well. We put together every layer of support your child will need, and we stay involved to help make sure it keeps working.
Professional guardianship
Think of the professional guardian as the person who holds the “big picture” responsibility. They are a qualified, neutral third party legally appointed to step in when you no longer can.
They also hold the legal authority to make high-level decisions on your child’s behalf, helping ensure their rights are protected and that they remain eligible for vital government benefits like Medicaid or SSI.
We work closely with trusted professional guardians, so they fully understand your child’s personality, preferences, and the specific “circle of care” you have worked so hard to build.
Medical coordination
While a guardian manages the legal and financial landscape, a medical care team focuses specifically on your child’s physical and mental health.
These professionals attend doctor visits, communicate with specialists, and make informed healthcare decisions when your child cannot. Most importantly, they are there to help navigate sudden health crises.
Having this layer in place provides immediate, expert support during emergencies. For instance, the client I mentioned earlier was diagnosed with breast cancer after her father’s passing. Because her medical team was already established, she had consistent advocates coordinating her treatment and recovery every step of the way, and she got through it.
Daily care and quality of life
This is where a plan transforms from a legal structure into a vibrant, daily life. These are the companions, aides, or caregivers who provide the hands-on support your child needs to thrive.
They handle the essential rhythms of the day, like ensuring nutritious meals, managing medication schedules, and facilitating social connection. They are the people who help your child get to the gym, visit friends, or explore the community. This support is critical, because it provides the freedom to experience the world.
A Note on Continuity
People move on, caregivers change jobs, and life happens. If anyone on your child’s team needs to be replaced, we help find the replacement. Our goal is that your child’s care stays consistent, year after year, no matter what changes around them.
Understanding the Special Needs Trust
One of the first questions families ask is how to leave money to a child with a disability without putting their essential benefits at risk. A special needs trust, sometimes called a supplemental needs trust, is designed specifically for this.
Rather than leaving assets directly to your child, you fund a trust that is managed by a trustee on their behalf. Because the assets belong to the trust and not to your child personally, they are generally not counted when determining eligibility for Medicaid, SSI, and other programs your child may depend on.
The trust document itself is important, but it’s only as strong as the planning around it. How it’s funded, who serves as trustee, and how distributions are made all matter, because certain types of payments can inadvertently affect benefit eligibility if they aren’t handled carefully. This is one of the areas where we work closely with a trusted Medicaid attorney to make sure the structure holds up over time, not just on the day it’s signed.
Why a Net Worth Statement Matters More Than You Think
Before any of the team-building, trust structuring, or benefit preservation can begin, the foundational step is getting a clear, complete picture of where things stand financially.
A net worth statement shows you what you own, what you owe, and what’s available to fund your child’s care for the decades ahead. For families with special needs considerations, this matters even more than it does in traditional planning, because the wrong asset in the wrong account can potentially jeopardize the government benefits your child depends on.
Think of the net worth statement as the starting point for every decision that follows:
- How will the trust be funded?
- What can the family afford for guardianship, housing, and daily care?
- Are there assets that need to be restructured before they create a Medicaid problem?
These are questions we work through together, and they all begin with a clear financial picture. We sit down with you, build your net worth statement, and use it as the foundation for everything that comes next.
When Is the Right Time to Start?
There’s a question we hear often, and it usually sounds something like, “I know I need to do this, but is it too early?” The honest answer is that it is almost never too early. If your child is young, the planning looks different than it does when your child is an adult, but the foundational pieces are the same (how assets are titled, whether a special needs trust should be in place, and who might eventually serve in key roles so those relationships have time to develop).
For families whose children are already adults, the conversation often carries more weight because the need feels closer. If that’s where you are, please know that a plan can come together more quickly than you might expect. The one thing we would encourage is not to wait until a health crisis forces the conversation. The best plans are built when there is time to be thoughtful, and when you, as the person who knows your child best, are fully able to guide those decisions.
Key Takeaways:
- What is special needs financial planning? It’s a coordinated plan that helps ensure a dependent family member with a disability is cared for financially, medically, and personally for the rest of their life.
- Why can’t I just leave money to my child in a will? An inheritance structured incorrectly can disqualify your child from Medicaid and other essential benefits. The right plan preserves those benefits while funding the life you envision for them.
- What makes UVW’s approach different? We can help you assemble and manage the entire care team, from guardianship to medical support to daily care, so nothing falls through the cracks when you’re no longer able to coordinate it yourself.
Starting the Conversation
If you’re a parent of a child with special needs, chances are you’ve been carrying this worry for a while. Maybe you’ve thought about it but didn’t know where to start. Maybe you’ve had conversations with an attorney or another advisor that covered part of the picture but left you wondering who would handle the rest.
You’re not alone in that. And the plan isn’t as far away as it might feel.
What families in your situation need is someone who will coordinate the guardianship, medical team, daily care, housing, benefits, and the financial structure underneath all of it. And someone who will stay with your family through the decades of changes that come after.
We’re here to put the entire team together, so your child is taken care of for the rest of their life. If you have a family member with special needs and you’ve been carrying this question, we’d love to sit down and talk through what a plan looks like for your family.
Schedule a complimentary meeting today.
Every investor’s situation is unique, and you should consider your investment goals, risk tolerance and time horizon before making any investment. Prior to making an investment decision, please consult with your financial advisor about your individual situation.
The foregoing information has been obtained from sources considered to be reliable, but we do not guarantee that it is accurate or complete, it is not a statement of all available data necessary for making an investment decision, and it does not constitute a recommendation. Any opinions are those of Corey Vertich and not necessarily those of Raymond James.
You should discuss any tax or legal matters with the appropriate professional.