Join attorney Michele Fuller for a powerful parent workshop on creating a meaningful and effective Memorandum of Intent. More than just a letter, this essential planning tool captures your unique knowledge, wishes, and guidance for the future care of your loved one with special needs. Learn how to clearly communicate daily routines, values, medical needs, support preferences, and long-term goals—ensuring your voice is heard even when you’re no longer there to speak. Walk away with practical tips and a framework to help you create a document that brings peace of mind and continuity of care.
When planning for a child with disabilities, parents tend to focus first on legal and financial tools like wills, special needs trusts, guardianships, and powers of attorney. But one of the most powerful documents in your toolbox isn’t legally binding at all. It’s the Memo of Intent: a written guide that allows you to speak for your loved one when you no longer can.
More than just a letter, a Memorandum of Intent is a bridge between the caregiving you’ve done and the care that will follow in your absence. It translates love into instruction, experience into wisdom, and daily routine into sustainable planning. It may not carry the weight of the law, but its emotional and practical weight cannot be overstated.
Families often assume that successors (whether siblings, trustees, or other caregivers) will “just know” how to step in. The unspoken belief is that if the legal documents are in place and the funds are sufficient, the quality of care will continue uninterrupted. But experience shows otherwise.
Successor caregivers, especially siblings or family members, are rarely prepared for the full scope of responsibility. They may know your child well, but that’s not the same as knowing how to manage day-to-day routines, navigate benefits systems, or respond to specific medical or behavioral needs. Even professional trustees, while skilled in managing finances, are not prepared to understand the lived experience of your child, in the absence of this guidance.
A Memo of Intent closes that gap. It gives the next caregiver something no legal document can: your voice, your insight, and your judgment.
Here is a scenario to drive this concept home. Bobby, a man in his fifties with cognitive disabilities, lived with his parents all his life. When both parents died suddenly, Bobby’s older sister (honoring a promise made to their mother) took him in. But there had been no deeper discussion, no testing of the arrangement, and no written instructions.
The result? Emotional and practical chaos. Bobby had never developed basic life skills, as his parents had always done everything for him. The sister, nearing retirement and building her dream home, was unprepared for the level of support Bobby needed. Her marriage suffered, and her life unraveled. All of this could have been prevented with honest communication and a carefully drafted Memo of Intent.
At its core, the Memo of Intent is a living document that reflects your values, your strategies, and your expectations. It’s where you explain not just what you do for your child, but why you do it that way. It’s how you pass on not only instructions, but instincts.
Importantly, this document is not legally binding. It doesn’t replace a special needs trust or a guardianship order. Instead, it complements those documents, giving future caregivers context for how to carry out the responsibilities they’ve been assigned.
Here’s what the Memo of Intent often includes:
This is not a static record. It’s a guide that evolves as your child grows and circumstances change.
Creating this document can feel overwhelming. That’s why it helps to follow a three-step approach, starting with an honest look at your current role as a caregiver.
Ask yourself: Where do you stand today? What aspects of caregiving are going well, and where are you stretched too thin? If your current routine is barely sustainable for you, it won’t be sustainable for someone stepping in, especially without your knowledge and experience.
Use a self-assessment model like the “8 R’s of Caregiving” to evaluate your caregiving situation:
And a bonus ninth:
Give each area a 1-10 score. Areas scoring low are simply informative. They are a signal where more support or planning is needed.
This step is not about perfection. It’s about identifying pain points before they become breaking points for someone else.
Next, turn your attention to your child. What is their current quality of life? Who are the key people in their world? What makes them feel safe, supported, and successful?
Document what’s working, whether that’s a trusted therapist, a daily routine, or a familiar caregiver. Just as important is documenting what hasn’t worked. Failed medication trials, unsuccessful routines, or problematic social settings are all critical insights for future caregivers.
Also include non-obvious knowledge: how they express discomfort, what overstimulates them, their favorite foods, TV shows, or sensory items. These are the kinds of details that seem small but can make or break the success of a new living situation or caregiver relationship.
Once you’ve clarified the present, you can begin to plan for the future. Where do you want your child to live? Who should be involved in their care? Are there programs or services they might grow into? Who should oversee their care? Who should oversee their finances? What checks and balances are, or should be, in place to ensure everyone is communicating effectively?
Again, this stage isn’t about locking down a perfect plan. It’s about exploring possibilities and setting goals. It may include:
Don't worry about solving everything at once. Start with small, actionable steps—one call, one research session, one conversation. Over time, these build momentum and clarity.
Writing the plan is only half of the process. The other half is testing it.
Bring in successor caregivers gradually. Let them help with daily routines, join doctor visits, or take over management of one small task. Observe how things go and refine accordingly.
Consider partial trust funding with a professional trustee to assess compatibility. Use tools like the True Link Card to test financial responsibility within benefit rules. Even short-term test runs like a week-long visit can uncover challenges early, while you’re still around to help solve them.
These tests aren’t just about logistics. They’re about preparing emotionally. The goal isn’t just that the successor is willing, but that they embrace the role confidently and with clarity.
A Memo of Intent is never done. It should be updated at least once a year, perhaps on your child’s birthday, at tax time, or during a holiday break when reflection feels natural.
These updates don’t just keep the document current, they also highlight your child’s growth. It can be encouraging to look back and see what was once a major challenge now feels routine. These milestones are easy to miss unless you write them down.
And importantly, share the Memo. Keep it accessible to those who will need it. Don’t let it be locked in a drawer or hidden behind a forgotten password. If you're comfortable, share it with your legal team, financial planner, or potential caregivers. The more eyes on it now, the smoother the transition later.
There are excellent tools to help make this process easier. The Dani Plan is a secure, centralized platform where families can organize key documents, routines, and care instructions. National Care Advisors provides assessments, benefits planning, and care coordination for individuals with complex needs. For a hands-on tutorial, the Moving to Mastery Memo of Intent Workshop offers templates and guidance to walk you through the process.
Creating a Memo of Intent isn’t about writing the perfect plan. It’s about making sure your experience becomes someone else’s roadmap. The most successful transitions happen not by chance, but through preparation. Start your Memo of Intent today, and take the first step in building a sustainable future for your loved one.
The Memo of Intent may not be a legally binding document, but it is a powerful document nonetheless.
It translates a lifetime of caregiving into a plan for continuity, security, and dignity. It eases the burden on those who follow you and maximizes the chances that your child’s life will be full of the same care, love, and opportunity you’ve fought to provide.
It doesn’t have to be perfect. It just has to be there and be shared.
