Special Needs Letter of Intent: Complete Template

A Letter of Intent (LOI) is the most important document most families never write. It isn't legally binding — but it's what makes a Special Needs Trust actually work after you're gone.

What Is a Letter of Intent?

A Letter of Intent is a detailed document written by parents or guardians of a person with special needs. It tells future caregivers, trustees, and guardians everything they need to know to provide good care: daily routines, medical history, behavioral triggers, financial structure, housing preferences, and the values that should guide decisions.

It is not a will, not a trust document, and not legally enforceable. It is guidance — the institutional knowledge you've spent years building, transferred to paper so it doesn't die with you.

Why You Need One Even If You Have an SNT

The Special Needs Trust handles the money. The Letter of Intent handles everything else. A trustee disbursing funds from your child's SNT needs to know: Is this expense appropriate? Does it align with what the parents intended? What did they value? The LOI answers those questions.

Without it, future trustees and guardians are making calls based on incomplete information — or expensive professional opinions about things you already knew.

The 8 Sections Every LOI Should Cover

Section 1: About the Person

The basics — told with the detail that matters for care, not just paperwork.

• Full legal name, nicknames, pronouns. What do they prefer to be called? Some people with intellectual disabilities care deeply about this.
• Primary diagnosis and key characteristics. Not a clinical summary — describe how the diagnosis actually presents. "Autism, level 2 — verbal but sometimes goes nonverbal under stress" is more useful than "ASD."
• Communication style. Do they communicate verbally? Via AAC device? Written notes? What are the best and worst approaches?
• Sensory sensitivities. Loud environments? Certain textures? Fluorescent lighting? These affect housing, activity selection, even trustee meeting locations.
• What brings them joy. This is the most important line in the whole document. Be specific. "Playing bass guitar, watching the same three Marvel movies on repeat, Saturday morning pancakes at the diner on Oak Street."

Section 2: Daily Care and Routines

Routine is often the most stabilizing force in a special needs person's life. Document it precisely.

• Morning routine. Wake time, medications and timing, breakfast preferences, hygiene sequence, any morning triggers to avoid.
• Evening routine. Wind-down activities, sleep hygiene, any nighttime needs.
• Medications. Name, dose, timing, who prescribes, what happens if a dose is missed, side effects to watch for. (Keep a separate updated medication list — reference it here.)
• Behavioral triggers and de-escalation. What escalates distress? What calms it down? If your child has ever had a crisis, document what worked and what made it worse.
• Support staff. If they have current support workers, day program staff, or behavioral specialists — names, relationships, why they work well.

Section 3: Medical History and Healthcare

• Primary care physician, specialists, therapists. Names, practice, contact. Note which relationships are long-standing and particularly trusted.
• Medical history summary. Major diagnoses, surgeries, hospitalizations. Not every ER visit — the ones that matter for future care decisions.
• Allergies. Medications, foods, environmental. Severity.
• Dental and vision needs. Are there special accommodations required for exams?
• Mental health. Any psychiatric diagnoses, medications, crisis history. Who to call in a mental health crisis.
• Healthcare preferences. Does the person need a caregiver present for all appointments? Do they do better with female vs. male clinicians? Any history of medical trauma?

Section 4: Financial Overview and Benefits Structure

This section links the LOI to the financial planning. Future trustees need to understand the full picture.

• Current benefits. List all means-tested benefits: SSI, Medicaid (and which waiver program, if applicable), HUD housing assistance, SNAP. Note the benefit amounts and any work incentive programs in use.
• SNT details. Is there a first-party or third-party SNT (or both)? Who is the trustee? Who is the successor trustee? What is the funding source (life insurance, estate assets, gifts)?
• ABLE account. Does one exist? Which state's plan? Current balance, annual contribution level. Who has signatory authority? (Note: as of January 2026, ABLE eligibility age expanded to 46 under the ABLE Age Adjustment Act.)¹
• Guardianship or conservatorship. Is there a legal guardian? Any limits on the guardian's authority? Has a guardian ad litem been appointed?
• Critical instruction: gifts. Explicitly note that direct cash gifts or inheritance to the beneficiary can disqualify them from SSI/Medicaid. Any family member or friend who might leave money to the dependent should instead direct it to the SNT. Include the trust's exact legal name and EIN so there's no ambiguity.

Section 5: Housing and Living Preferences

• Current living situation. With family? Supported living? Group home? Independent with supports?
• Long-term preference. What did the person say they want? What do you believe is realistic and appropriate?
• Geographic preferences. Do they have strong ties to a particular area — family, church, day program, friends? How important is proximity to family?
• Environment needs. Yard access? Single room vs. shared? Urban vs. quiet neighborhood? Pets?
• What to avoid. Are there specific living arrangements that would be harmful? Prior bad experiences with certain providers?

Section 6: Education, Employment, and Day Programs

• Current program. School, day program, supported employment, or sheltered workshop. Provider name, contact, what they do well.
• Education history. IEP history, key accommodations, what has worked academically.
• Employment capacity. Has the person worked? What kind of work fits their abilities and interests? Have they participated in any vocational programs?
• Long-term preference. Does the person have expressed goals around work or structured activity? Even if unlikely, document the aspiration.

Section 7: Social Life and Relationships

• Important relationships. Friends, extended family, neighbors, church community. Who should be kept in the person's life if something happens to primary caregivers?
• Relationship history. Any romantic relationships, past or present? How should these be handled by future caregivers?
• Activities and community involvement. Sports leagues, hobby groups, faith community, volunteer work.
• Technology and media. What platforms do they use? Are there any content restrictions you've maintained? Any accounts they manage independently?

Section 8: Future Wishes and Values

This is the hardest section to write and the most important one for trustees navigating gray areas.

• End-of-life preferences. As much as your family has discussed this — resuscitation, life support, hospice preferences. Reference the person's advance directive or POLST if one exists.
• Religious or spiritual values. What role has faith played in their life? Should it continue to?
• What "a good life" means for this person. Not a clinical outcome statement. A real description. "We want her to be happy, feel safe, and spend time with people who love her. She doesn't need to be productive by any external measure. She needs to feel seen."
• What to do if circumstances change significantly. If a current trustee or guardian can no longer serve, what process do you want followed? Are there specific individuals or organizations you trust to advise?
• Funeral and burial preferences. If your child passes before you, document what you want. If you go first — document what they've expressed they'd want, if anything.

Practical Notes for Writing Your LOI

• Use plain language. Write as if to a loving stranger who has never met your child. No jargon, no acronyms without explanation.
• Date every version. Put the date in the header and filename. LOIs become stale; readers need to know how old the information is.
• Review annually. Set a calendar reminder. Things change: medications change, programs change, living situations change. An outdated LOI can be as harmful as none.
• Store copies appropriately. Give one to the SNT trustee, one to the guardian, one to the attorney who drafted the SNT. Keep one with your estate documents. Consider a digital copy with your estate planning attorney's secure storage.
• Tell your family it exists and where to find it. The most common problem isn't that parents don't write the LOI — it's that no one knows where it is.