Companion video: “Special Needs Trusts: Basics” – joleneblackbourn.com/videos
Of everything I help families create, there is one document that is not legally binding, costs nothing to write, and may be the most important thing you ever hand to the people who will care for your child.
It is called a letter of intent.
I am Jolene Blackbourn, a California estate planning attorney and the mother of two children with special needs. I have drafted a great many trusts, but I have also sat down as a parent to write this document for my own family, and I can tell you it is a different kind of work entirely.
Your trust protects your child’s money. Your letter of intent protects everything else.
What a Letter of Intent Actually Is
A letter of intent is a written guide, prepared by you, that tells future caregivers everything they need to know about your child that no legal document could ever capture.
It is not a will. It is not a trust. It is not signed before a notary, and no court will enforce it.
What it is: the closest thing to handing someone your knowledge of your child.
- The routines that make their day go smoothly
- The words they use, and what those words mean
- The sound of the vacuum that sends them out of the room
- The one food they will always eat when nothing else works
- Who their friends are, what makes them laugh, and what they dream about
Every parent carries hundreds of these details. They live in your head, unwritten, and they disappear if you never put them down.
Why Every Special Needs Family Needs One
Families sometimes ask why a document with no legal force deserves serious effort. Here is my honest answer.
It Preserves Knowledge Nobody Else Has
You are the world’s leading expert on your child. A future caregiver, however loving and competent, starts from zero. Your letter of intent closes that gap in a way that years of trial and error otherwise would.
Think about how much you learned in the first year alone, which approaches worked, which specialists were worth the drive, and how to tell the difference between tired and genuinely unwell. None of that transfers automatically. Written down, it transfers instantly.
It Guides Your Trustee’s Decisions
Your trustee controls the money, but this document tells them what your child actually needs it for, which therapies helped, which programs failed, and what genuinely improves their life. It turns a bank account into a plan.
It Reduces Family Conflict
When relatives disagree about care, your written wishes settle the argument. A clear letter of intent speaks in your voice when you cannot be there to speak for yourself.
It Eases a Terrible Transition
If your family ever has to step in suddenly, they will be grieving and overwhelmed. This document gives them somewhere to start on the worst day of their lives.
What to Include in Your Letter of Intent
There is no required format, which is freeing but can also be paralyzing. Here is the structure I recommend, section by section.
Personal History and Background
Start with the story only you can tell.
- Date and place of birth, family background
- Diagnosis, when it was made, and how it has evolved
- Major milestones, both medical and personal
- Schools attended, programs tried, what worked, and what did not
Daily Routine and Care Needs
This is often the most immediately useful section for a new caregiver.
- A typical weekday, hour by hour, and how weekends differ
- Morning and bedtime routines in detail
- Help is needed with dressing, bathing, eating, and hygiene
- Sleep patterns and what disrupts them
Medical Information
Be thorough here, and keep it current.
- All diagnoses and their history
- Current medications, dosages, and schedules
- Allergies and adverse reactions
- Every doctor, therapist, and specialist, with contact details
- Insurance information and benefit program enrollment
- How your child communicates pain or discomfort
Communication and Behavior
This section prevents enormous misunderstanding.
- How your child communicates, speech, devices, signs, gestures
- Personal words or phrases and what they mean
- Signs of anxiety, overwhelm, or distress
- What calms them, and what makes things worse
- Triggers to avoid whenever possible
Education and Employment
- Current school, program, or workplace
- IEP or support plan history and key goals
- Skills they are building
- Your hopes for their education or work life
Social Life, Interests, and Joy
Do not skip this section. It is the one that keeps your child’s life feeling like their life.
- Friends, relationships, and the people who matter to them
- Hobbies, favorite activities, shows, music, and foods
- Places they love to go
- Things that reliably make them happy
- Religious or cultural practices important to your family
Living Arrangements and Future Vision
- Where they live now, and what makes that arrangement work
- What do you hope for their living situation over time
- Settings you believe would not suit them, and why
- Your vision for their independence
Financial and Legal Overview
- The existence of the special needs trust and who the trustee is
- Benefits they receive: SSI, Medi-Cal, Regional Center services
- Where key documents are kept
- Your attorney’s contact information
Letter of Intent vs. Your Legal Documents
| Letter of Intent | Special Needs Trust | |
| Legally binding? | No, it is guidance | Yes, an enforceable legal document |
| Who writes it | You, in your own words | Your attorney drafted for your family |
| What it covers | Care, routines, personality, wishes | Assets, distributions, trustee authority |
| Cost to create | Free | Professional fee |
| How often updated | Yearly, or as things change | Reviewed every few years |
| Who reads it | Caregivers, trustee, family | Trustee, courts, benefit agencies |
They are not alternatives. One protects the money; the other explains the person.
Common Mistakes Parents Make
A few patterns come up again and again, and each one is easy to avoid once you see it.
Waiting for the Perfect Moment
The most common mistake is not a writing error at all; it is never starting. Parents tell themselves they will do it when things calm down, and things never quite calm down. A rough draft written this weekend protects your child far better than a polished document that stays imaginary.
Writing Only the Good Parts
It is an instinct to present your child at their best. But a caregiver who is blindsided by a meltdown they were never warned about is a caregiver set up to fail. Describe the hard days honestly, the behaviors, the triggers, the approaches that backfire. That candor is a kindness.
Being Too Vague
“He likes music” helps almost no one. “He calms down within minutes if you put on the same playlist we keep on the kitchen tablet, and he does not like anything with sudden loud drums” is genuinely useful. Specificity is the whole point of this document.
Never Telling Anyone It Exists
A letter of intent locked in a drawer nobody knows about does nothing. Tell your trustee, your successor caregivers, and close family where the current version lives, and make sure at least one other person can reach it quickly.
Practical Tips for Writing Yours
The blank page intimidates almost everyone. A few things that help:
- Start messy. Bullet points, half-sentences, notes on your phone. Polish later, or never.
- Write one section at a time. Nobody finishes this in an afternoon.
- Write like you are talking to a person, because you are. Warmth matters more than formality.
- Include the small things. How do they like their sandwich cut? The specific blanket. These details are gold.
- Say the hard things too. Difficult behaviors, approaches that backfire. Honesty helps caregivers more than a flattering portrait.
- Ask someone else to read it. A spouse or sibling will spot what you assumed everyone knows.
- Keep it somewhere findable, and tell your trustee and family exactly where.
Keeping It Current
A letter of intent written once and forgotten loses much of its value. I suggest reviewing it:
- Once a year, perhaps tied to a birthday, so you remember
- After any major change, a new diagnosis, medication, school, or living situation
- Whenever your caregiving team changes
- Alongside your estate plan review, which I recommend every five years
Date every version. Keep the current one with your trust documents, and replace old copies rather than letting several versions circulate at once; conflicting instructions help nobody.
A practical habit: when you sit down for your annual review, read it as though you were a stranger meeting your child for the first time. The gaps become obvious quickly.
Why This One Is Personal for Me
I have written this document for my own children, and I will tell you plainly: it is emotionally hard. You are imagining a world where you are not there. Most parents put it off for exactly that reason.
But I have also seen what happens when a family has one, and when they do not. The difference for the child is enormous.
If you participate in the Self-Determination Program, ask me about qualifying for a complete estate plan, special needs trust included, for as little as $500 out of pocket.
Your Knowledge Is Worth Preserving
You have spent years learning about your child. That knowledge is irreplaceable, and right now, most of it exists nowhere but in your memory.
A letter of intent captures it. A special needs trust protects the resources for which it is intended. Together, they are how a parent keeps caring for their child beyond their own lifetime.
- Flat-fee pricing – you know your investment upfront
- Fully virtual firm – everything handled from home, anywhere in California
- Self-Determination Program? A complete plan may cost as little as $500 out of pocket
Let’s build the plan that carries your wishes forward. Schedule your free 30-minute consultation or call 818-473-5325 today.
Serving La Crescenta, Montrose, Tujunga, and Sunland – and families across California, virtually.
Frequently Asked Questions (FAQs)
| Question | Answer |
| Is a letter of intent legally binding? | No. It is guidance, not a court-enforceable document. But caregivers, trustees, and even courts give real weight to a parent’s clearly written wishes. |
| How long should it be? | However long it needs to be. Some run a few pages; others reach thirty. Completeness matters far more than length. |
| Do I need an attorney to write it? | No, this one is yours to write, in your own words. I help families make sure it aligns with the trust and reaches the right people. |
| When should I write it? | As soon as possible. An imperfect letter of intent that exists is worth infinitely more than a perfect one you never got around to. |
| Who should receive a copy? | Your trustee, your named guardian or successor caregivers, and close family involved in care. Tell them where the current version lives. |
| What if my wishes change? | Simply update it. That is the advantage of a document with no legal formalities; revise it whenever life shifts. |
