What Happens to My Child With Special Needs When I’m Gone?
One of the hardest questions families ask is not financial.
It’s personal.
“What happens to my child when I’m no longer here to care for them?”
For many parents and caregivers, this question sits quietly in the background for years. Not because they are avoiding it, but because it can feel overwhelming to even know where to begin.
In fact, studies suggest only a small percentage (around 6%) of families have a fully coordinated, and clearly communicated, long-term plan in place. If you have felt overwhelmed by this process, you are far from alone.
At the same time, that reality highlights just how important these conversations are.
And while finances are certainly part of the conversation, most families eventually realize something important:
A plan for the future is about far more than money.
It is about continuity.
Stability.
Relationships.
And helping ensure the people, systems, and support surrounding your loved one continue long after you are gone.
A Plan Is More Than Financial
When families begin thinking about long-term planning, the focus is often on trusts, benefits, or financial accounts.
Those pieces matter.
But some of the most important questions have nothing to do with money:
- Who truly understands my child’s needs and routines?
- Who would help coordinate care?
- How will future caregivers know what matters most to them?
- What does a meaningful life look like for my child years from now?
These are deeply personal decisions, and they deserve thoughtful conversations long before they become urgent.
The Importance of a Care Team
One of the most helpful shifts families can make is moving from the idea of a single caregiver to the idea of a care team.
A strong plan often includes:
- Family members
- Siblings or trusted relatives
- Trustees
- Attorneys
- Financial advisors
- Medical professionals
- Community support systems
When these people understand their roles and communicate well together, the future can feel significantly less uncertain.
And while these conversations can feel difficult initially, we often find that once families begin putting a coordinated plan into place, they experience a greater sense of confidence and peace of mind knowing important decisions are no longer left unspoken or uncertain.
Including Siblings in the Conversation
For many families, siblings will eventually play an important role in supporting a loved one with special needs.
That does not necessarily mean they will become full-time caregivers or take on financial responsibility alone.
More often, it means helping them understand:
The long-term vision for their sibling
The structure that has been put in place
Who else is involved in the care team
Where important information can be found
When siblings are included gradually and thoughtfully, it can reduce uncertainty and create greater confidence for everyone involved.
Why Documents Matter—But Aren’t Enough
Legal and financial structures are important parts of a comprehensive plan.
Families may consider tools such as:
- Special Needs Trusts
- ABLE accounts
- Estate planning documents
- Long-term funding strategies
But documents alone do not fully tell your child’s story.
That is why many families also create a Letter of Intent or care guide that includes:
- Daily routines
- Medical preferences
- Communication styles
- Favorite activities
- Social connections
- Important personal details only a caregiver would know
In many ways, these personal details become just as valuable as the financial plan itself.
Start Before You Feel Ready
One of the most common things we hear from families is:
“We know we need to do this… we just don’t know where to start.”
That is completely understandable.
These conversations can feel emotional because frankly, they are emotional. They reflect the deep care and responsibility families carry every day.
The good news is that building a thoughtful plan does not happen all at once.
Often, just like Rhett’s family, it started with a single conversation . Then gradually:
- Roles become clearer
- Priorities become more organized
- Documents begin taking shape
- And the future begins to feel more manageable
From Our Seat
One of the greatest gifts families can give their loved one is not simply financial support.
It is clarity.
Clarity around:
- Who will help
- How decisions will be made
- What resources are available
- And what kind of life they hope to create moving forward
We believe the best plans are built collaboratively and intentionally over time—not out of fear, but out of care.
Because ultimately, this kind of planning is not just about preparing for the future.
It is about helping ensure your loved one continues to be supported, understood, and cared for in the way you would want long into the future.
Start a Conversation
If your family has started thinking about long-term planning for a loved one with special needs, we would be honored to be a resource.
Whether you are beginning these conversations for the first time or looking to strengthen an existing plan, we can help you think through how the financial, legal, and personal pieces fit together.
You do not have to navigate these decisions alone.
Van Hulzen Financial Advisors is an investment advisory firm registered with the Securities and Exchange Commission ("SEC"). SEC registration does not imply a certain level of skill and or expertise. The material presented is for informational and educational purposes only. It is not meant to be considered investment advice or a solicitation to purchase or sell any securities. Van Hulzen is not a tax advisor. Any professionals highlighted in the material presented are not affiliates of Van Hulzen. The opinions, thoughts, views, or commentary expressed do not represent the official views of Van Hulzen or its employees. The information provided by any of the outside professionals highlighted has not been verified for accuracy.