A Letter of Intent (also called a Life Care Plan) is a non-legal document that tells future caregivers everything they need to know about your disabled loved one. It's the most important document most families never create—and it costs nothing but time.
Why You Need a Letter of Intent
No one knows your loved one like you do. You know:
- What makes them happy
- What triggers anxiety
- How to communicate effectively
- What their daily routine looks like
- Who the important people in their life are
- What medical issues need attention
When you're no longer able to provide care, this knowledge can be lost. A Letter of Intent preserves it for future caregivers, trustees, guardians, and family members.
A special needs trust provides money. A Letter of Intent provides guidance on how to use it.
What to Include
Section 1: Introduction and Purpose
- Who your loved one is (beyond their disability)
- Your hopes and dreams for their future
- The purpose of this document
- Date created and date last updated
Section 2: Personal History
- Birth date, birthplace
- Significant life events
- Educational history
- Work history (if applicable)
- Living situations over time
Section 3: Daily Living
Routine:
- Morning routine (what time, what order, what helps)
- Mealtime preferences
- Evening routine
- Sleep habits
Personal care:
- Level of assistance needed
- Preferences and sensitivities
- Personal care items used
Household:
- Chores they can handle
- Assistance needed
- Safety considerations
Section 4: Communication
- How they communicate
- Signs of happiness, distress, needs
- Effective communication strategies
- What to avoid
- Technology or devices used
Section 5: Medical Information
Current conditions:
- Diagnoses
- Medications (dosages, schedules, purposes)
- Allergies
- Current providers
Medical history:
- Past surgeries
- Hospitalizations
- Reactions to medications
- What works and doesn't work
Emergency information:
- Warning signs to watch for
- What to do in an emergency
- Hospital preferences
Section 6: Behavioral Support
- Common behaviors and what they mean
- Triggers to avoid
- Calming strategies
- Behavioral support plans
- What works when they're upset
Section 7: Social and Community Life
Important relationships:
- Family members and their roles
- Friends
- Support network
- Who to contact for what
Activities:
- Favorite activities
- Programs they participate in
- Community involvement
- Religious or spiritual practices
Section 8: Education and Employment
- Current school or day program
- Past educational experiences
- What learning approaches work
- Employment history
- Job coaching needs
Section 9: Residential Preferences
- Current living situation
- Ideal future living situation
- What's important in a home
- Roommate considerations
- Geographic preferences
Section 10: Financial Information
- Income sources
- Benefit information
- Special needs trust details
- ABLE account information
- Representative payee info
Section 11: Final Arrangements
- Preferences for end-of-life care
- Funeral and burial preferences
- Religious or cultural considerations
Tips for Creating an Effective Letter
Be Specific
Not helpful: "She likes to stay busy."
Helpful: "She enjoys folding laundry and will do this for hours. She likes the fabric softener smell. Give her towels to fold when she seems agitated."
Include the "Why"
Not helpful: "Don't let her skip lunch."
Helpful: "She tends to skip meals when anxious but then has blood sugar drops that cause behavioral issues. If she skips lunch, offer a smoothie—she'll usually drink that even when refusing food."
Update Regularly
Set a reminder to review and update annually, or after any major change:
- New medications
- New providers
- Changes in routine
- New challenges or successes
- Updated contact information
Share Appropriately
Give copies to:
- Successor trustee
- Backup caregivers
- Medical providers
- Case managers
- Family members who may step in
Store securely but accessibly—a document no one can find doesn't help.
Make It Usable
- Use clear headings
- Include a table of contents
- Consider a one-page "quick reference" summary
- Update the "last modified" date prominently
Common Mistakes
Mistake 1: Never creating one
Even a partial Letter of Intent is better than none. Start somewhere.
Mistake 2: Making it too legal
This isn't a legal document. Write in plain language. Include personality, not just facts.
Mistake 3: Keeping it in your head
"Everyone knows what Michael needs" isn't true—and won't help when you're not there.
Mistake 4: Never updating
An outdated Letter of Intent can cause harm. Review regularly.
Mistake 5: Hiding it
Your Letter of Intent should be easy to find when needed. Tell people where it is.
Getting Started
You don't have to complete this all at once. Start with:
- Emergency medical information - This matters most if something happens to you suddenly
- Daily routine - So caregivers can maintain stability
- Communication - So they can understand your loved one
Add sections over time. Each addition makes the document more valuable.
At Bordeaux Legacy Law, we help families create comprehensive special needs plans that include both the legal documents (special needs trusts, powers of attorney) and guidance on the equally important non-legal planning like Letters of Intent.
Frequently Asked Questions
Is a Letter of Intent legally binding?
No. A Letter of Intent is a guidance document, not a legal instrument. Trustees and caregivers aren't legally required to follow it. However, a thoughtful Letter of Intent carries moral weight and provides invaluable information for those caring for your loved one.
How long should a Letter of Intent be?
Length varies dramatically—from a few pages to over 50 pages for complex situations. Don't worry about length; focus on including the information future caregivers will actually need. A comprehensive document is better than a brief one, but a brief one is better than none.
Who should write the Letter of Intent?
Anyone who knows the individual well can contribute, but usually it's parents or primary caregivers. Involve the disabled individual in the process when possible—their own voice about their preferences matters most.
How often should I update the Letter of Intent?
Review annually at minimum, and update after any significant change: new medications, new providers, changes in routine, new behavioral challenges, or changes in preferences. Put a reminder in your calendar.