Why Not You? Why Not Now? A Nudge Toward Your Legacy
“You can’t go back and change the beginning, but you can start where you are and change the ending.”— C.S. Lewis Every week, I meet virtually with a brilliant and…
When you’re caring for a loved one with a disability, you know that your planning horizon stretches far beyond the immediate needs of today. You’re thinking about tomorrow, next year, and the decades ahead. The question that keeps many families up at night is: “How do I make sure my child is cared for without jeopardizing their benefits?”
This is exactly why Special Needs Planning matters. In my work as an estate planning attorney here in Northeast Ohio, I sit with families every week who want more than a quick fix — they want a thoughtful, comprehensive plan that protects benefits and gives their loved one a chance to live a fuller, richer life
Many individuals with disabilities rely on programs like Medicaid and Supplemental Security Income (SSI) for essential healthcare, housing, and income support. The challenge is that these programs have strict financial eligibility rules. An inheritance, life insurance payout, or even a well-intentioned gift can suddenly put a person over the limit, risking the very benefits they depend on.
That’s why families turn to Special Needs Trusts (SNTs). These trusts allow money or property to be set aside for a loved one without affecting their eligibility for crucial benefits.
But here’s what I want you to hear clearly: a Special Needs Trust is only one piece of the puzzle.
An SNT isn’t meant to replace public benefits—it’s designed to supplement them. That means the trust can pay for things that SSI or Medicaid don’t cover, such as:
Travel and vacations
Specialized therapies
Education and training
Recreational activities
Companionship and support services
These extras may not seem essential on paper, but they can make an enormous difference in a person’s quality of life. Families often describe it as the bridge between “basic survival” and “living with dignity and joy.”
One of the most common approaches families take—often out of fear of losing benefits—is to disinherit their loved one with a disability. Instead of leaving assets directly to that person, they leave everything to another child or relative with the hope (and expectation) that this family member will “do the right thing” and share or manage funds for their sibling.
On the surface, this may seem practical. But NAELA and other experts caution strongly against this approach, and here’s why:
Legal risks: The assets legally belong to the sibling. They can be lost to creditors, divorce, lawsuits, or bankruptcy. Nothing ensures those funds will remain available for the person with special needs.
Practical risks: Even the most loving sibling can die unexpectedly, become incapacitated, or move away—leaving your loved one vulnerable.
Family stress: This arrangement can create resentment, jealousy, or conflict between siblings, especially if one feels overburdened by responsibility.
Emotional toll: The sibling serving as an “unofficial trustee” may carry the heavy weight of guilt, worry, and second-guessing.
Benefit disruption: Without the proper legal structure, even small amounts of money handed directly to the person with a disability can disqualify them from benefits.
Instead of disinheriting your loved one, the recommended alternative is to establish a properly drafted Special Needs Trust. A trust provides the same protections you might hope to achieve informally, but with the legal safeguards your family needs. The trustee—whether that’s a sibling, professional, or combination of both—has a clear legal duty to use trust funds for the benefit of your loved one. And because the trust is structured to comply with benefit rules, it ensures eligibility for SSI and Medicaid stays intact.
In short, a Special Needs Trust provides peace of mind for parents, legal protection for siblings, and long-term stability for the family member with a disability.
The National Academy of Elder Law Attorneys (NAELA)—an organization I’m proud to be connected with as part of my estate planning practice—reminds us that true special needs planning requires a broader lens. Yes, the trust is critical. But it’s just one element of a holistic plan that should also consider:
Legal decision-making: Who will help your loved one make healthcare, financial, or daily living decisions if they can’t do it alone?
Maximizing public benefits: Families often don’t realize there may be multiple layers of state and federal programs available.
Housing: From supported living to group homes, housing choices can shape a person’s independence and social opportunities.
Care coordination: Services, providers, and systems need to work together.
Long-term support systems: Who will step in when parents or primary caregivers are no longer able to?
Before I became an estate planning attorney, I worked as a school psychologist. Day after day, I sat at the table with families of children with disabilities, helping them navigate the education system. I saw firsthand how much love, energy, and advocacy it takes to secure the right services and supports.
Now, when I sit down with families in my law practice, I recognize the same concerns I saw in schools—just with different stakes. Instead of focusing only on educational services, families are thinking about financial security, medical care, and adulthood transitions. My background helps me understand that planning for a loved one with special needs isn’t just about money—it’s about honoring the whole person and building a support system that lasts.
Families sometimes tell me:
“I’ll just leave money to my other children and trust them to take care of their sibling.”
“We don’t have that much money, so a trust isn’t necessary.”
“We’ll figure it out later.”
Here’s the truth:
Leaving money to another child creates legal, financial, and emotional risks and often backfires.
You don’t need to be wealthy for a trust to make sense—even modest resources can make a life-changing difference when protected properly.
Waiting often means missing opportunities to plan thoughtfully and involving your child in decisions while you’re still here to guide them.
Special Needs Planning can feel overwhelming, but you don’t have to go it alone. My role is to help families:
Understand the options available
Design a Special Needs Trust that fits their unique situation
Coordinate decision-making tools, benefits, and long-term plans
Provide ongoing guidance as circumstances change
At Ohio Heritage Law, our mission is to give families the peace of mind that comes with knowing their loved one will be cared for—today and in the future.
A Special Needs Trust is a cornerstone of planning, but it’s not the whole house. Building a secure future for your loved one with a disability requires legal tools, benefit coordination, housing and care planning, and—most importantly—the loving foresight of family.
If you’re in the greater Northeast Ohio area and you’re ready to explore what Special Needs Planning could look like for your family, our team at Ohio Heritage Law would be honored to sit down with you. Together, we can build a plan that protects benefits, safeguards dignity, and ensures your loved one has the best life possible.
Schedule a free discovery meeting to learn more about how we can help you protect your loved one.
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