Why Every Florida Parent of a Special Needs Child Needs a Letter of Intent
- Randy Narkir, Esq.
- May 20
- 4 min read
Planning for a child with special needs requires more than just legal documents. Yes, wills, trusts, and guardianships are vital. But there’s one document that carries something none of those can: your voice, your insight, your love.
It’s called a Letter of Intent (LOI).
And while it isn’t legally binding, it may be the most important and personal document in your estate plan.
What Is a Letter of Intent?
A Letter of Intent is a written document created by a parent or caregiver of a person with special needs. It captures everything someone would need to know if they had to step into your shoes tomorrow.
Unlike a will or a trust, this isn’t about what your child will inherit. It’s about how your child lives, communicates, feels safe, thrives, and connects to the world around them.
It answers questions like:
How does my child calm down after a meltdown?
What bedtime routine helps them feel secure?
Who do they trust?
How do they express hunger, discomfort, or joy?
It gives a future guardian or caregiver something much more powerful than legal authority, it gives them insight.
Why These Trusts Matter in Florida
Families across Florida face a delicate balancing act. Government benefit programs like Medicaid and Supplemental Security Income (SSI) have strict asset limits, typically no more than $2,000 in countable resources. If you leave money directly to your child with disabilities, you may unintentionally disqualify them from these benefits.
A third-party special needs trust allows your loved one to enjoy the benefit of your financial support without losing eligibility for critical services.
Funds in the trust can be used to pay for:
Therapies or medical equipment not covered by insurance
Specialized education or tutors
Travel and recreation
Housing support
Personal care attendants
And much more
Why It Matters So Much in Florida
Florida’s special needs infrastructure is complex and inconsistent. Services vary county to county. There are long waitlists for Medicaid Waiver programs. School district resources differ widely. And professional guardianship support, while improving, is still uneven.
In this landscape, even the most well-intentioned person, whether it’s a family member, teacher, or court-appointed guardian, can feel overwhelmed trying to learn your child’s world from scratch.
Your Letter of Intent becomes a bridge between what your child needs and the people who want to do their best, but need help getting there.
And because Florida families often move here from other states or live far from extended relatives, having a document that spells out the “little things” becomes critical.
What Should You Include in a Letter of Intent?
The beauty of this document is that it’s completely personalized. It should reflect your child’s individuality, not just their diagnosis.
We suggest organizing your LOI into the following sections:
1. Basic Information
Full legal name and nickname
Date of birth
Diagnosis summary
Medicaid, SSI, ABLE account numbers (if applicable)
2. Daily Living & Routine
Wake-up and bedtime routines
Preferred foods
Sensory preferences and aversions
Independence level in self-care tasks
3. Communication Style
Verbal or non-verbal
Words, gestures, or devices used to communicate
Emotional cues or expressions of distress
4. Medical Details
Diagnoses, medications, allergies
Doctors and therapists with contact information
Emergency protocols
Consent boundaries or behavioral plans
5. Education & Therapies
School and IEP information
Current therapy schedule and goals
Learning styles or accommodations that help
Progress or challenges
6. Social & Community Life
Trusted people, friends, or mentors
Religious, cultural, or community activities
Activities that bring joy or comfort
Known triggers or stressful situations
7. Long-Term Vision
Independent vs. supported living
Vocational goals or interests
Family members or friends to remain involved
Personal values or life goals to be respected
8. Final Notes
Passwords, access codes, contact directories
Location of legal documents
Important annual dates (recertifications, reviews)
Anything else only you would know
Real-Life Example: The Plan That Held a Family Together
Elaine, a single mother in Fort Lauderdale, passed unexpectedly from a stroke. Her son Micah, age 19, had autism, was non-verbal, and was in the middle of transitioning out of his high school program.
Elaine had done her legal planning:
She named her sister as guardian.
She created a third-party special needs trust.
She set up an ABLE United account for daily expenses.
But what truly saved Micah’s transition was her Letter of Intent.
Micah’s aunt didn’t know about his aversion to fluorescent lighting, his favorite calming music, or the fact that he only ate three specific brands of gluten-free crackers.
Elaine had written it all down.
Her Letter of Intent helped Micah’s aunt stabilize his routine, retain his trusted care providers, maintain his benefits, and most importantly, preserve his sense of emotional safety in a time of loss.
How It Complements Your Legal Plan
Your Letter of Intent doesn’t replace legal documents, it enhances and personalizes them.
Legal Tool | Purpose |
Will | Distributes assets and names a guardian |
Trust | Protects financial support and benefits |
Guardianship | Grants decision-making authority |
Letter of Intent | Transfers context, knowledge, and care |
Together, these tools form a complete and thoughtful estate plan.
How to Store and Maintain It
Keep a printed copy in your estate planning folder
Store a digital version in a secure but accessible place
Share it with your child’s care team and trustee
Update it every 1–2 years or after major life changes
Final Thoughts
Planning for a child with special needs isn’t just about legal compliance, it’s about dignity, continuity, and compassion. A Letter of Intent is your way of ensuring your child’s world feels familiar and safe, even when you’re not there to guide it.
It’s your opportunity to say:
“This is who my child is. This is how to love them well.”
And that, more than any form or policy, is what makes all the difference.
Want to start yours today?
We offer a free Letter of Intent Checklist for Florida Families to help you organize your thoughts and begin writing your guide, one section at a time.
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