When you create a Special Needs Trust for a child with a disability, you’re not just planning for next year, but you’re potentially planning for the next 40, 50, or even 60 years of their life.
Consider how dramatically the world has changed since 1985. The internet, medical advances, and government benefit rules have all shifted in ways no one could have predicted. If you write a trust today with rigid, narrow rules, you might inadvertently limit your trustee’s ability to adapt to a world we can’t yet imagine.
The Risk of Over-Specification
It’s natural to want detailed instructions. You might be tempted to specify exact apartment complexes, particular therapies, or specific care facilities. However, what happens if that apartment complex closes in 2035? What if that therapy is replaced by superior treatments in 2040?
When trust language is too specific, trustees may be legally blocked from paying for better alternatives without expensive court intervention to modify the document.
Building in Flexibility Through Broad Discretionary Language
Instead of rigid checklists, grant your trustee broad discretion using language that authorizes them to pay for “anything that improves the beneficiary’s quality of life and well-being.” This flexibility allows trustees to pivot when circumstances change.
If revolutionary assistive technology is invented twenty years from now that helps your child communicate or gain independence, your trustee can access funds immediately without questioning whether it fits a 2026 definition of “medical care” or “therapy.”
The Trust Protector: Your Ultimate Safety Valve
A Trust Protector is a person or committee appointed separately from the trustee who has the power to modify trust provisions when laws change or unforeseen circumstances arise.
This role is particularly valuable because government benefit rules change frequently. When SSI or Medicaid requirements shift, a Trust Protector can legally amend problematic sections to ensure your child doesn’t lose eligibility, which is something trustees typically cannot do independently.
The Letter of Intent: Guidance Without Handcuffs
Since you shouldn’t embed rigid personal preferences into legal documents, where do those important details belong? In a Letter of Intent.
This separate document serves as a “user manual” for your child that you can update annually. It might include preferences about swimming programs, clothing brands, important relationships, and daily routines. Because it’s not legally binding, you can modify it as your child’s needs and preferences evolve without legal fees, while still providing trustees with valuable guidance.
Planning for Changing Trust Values
Sometimes private trusts become impractical to manage, particularly if balances drop significantly. A well-drafted Special Needs Trust should include provisions allowing the trustee to “decant” funds into a Pooled Special Needs Trust managed by a nonprofit organization.
This ensures that even if resources diminish, your child retains professional management and benefit protection for decades to come.
Looking Ahead with Confidence
We cannot predict the future, but we can plan for it thoughtfully. A well-constructed Special Needs Trust is designed to evolve alongside changing circumstances, technologies, and regulations. By building flexibility into your plan today, you ensure your child receives appropriate support regardless of what 2050 looks like.
If you’re creating or reviewing a Special Needs Trust and want to ensure it provides both protection and flexibility for your child’s future, contact the Law Offices of Laurie E. Ohall at (813) 438-8503 to discuss your family’s unique needs.