The Letter of Intent is the most universally recommended planning tool in IDD transition practice. It is also, by any empirical measure, the least validated. Eighty-four percent of parents never finish one. No published study has demonstrated that the existence of an LOI improves care outcomes for the person with IDD. The professional consensus is decades ahead of the evidence.
What Parents Are Told
If you are a parent of a child with intellectual and developmental disabilities and you have spoken to an attorney, a financial planner, or an advocacy organization about planning, you have almost certainly been told to write a Letter of Intent. The Special Needs Alliance recommends it. The Arc recommends it. MetLife, Penn Mutual, and dozens of practitioner guides recommend it. The advice is everywhere, and it sounds right.
A Letter of Intent is an informal, non-binding document in which a parent records detailed information about their child — medical history, daily routines, care preferences, behavioral patterns, communication methods, provider relationships, benefits and services, housing arrangements, and long-term wishes. It is addressed to whoever will assume care responsibilities when the parent can no longer serve in that role: a sibling, a guardian, a trustee, a residential provider. Think of it as a user manual for your child's life — everything the next person needs to know, written down in one place.
The concept is sound. Every new person who enters the life of a person with IDD — every new group home staff member, every new caseworker, every new doctor, every successor guardian — needs this information. Without it, they are starting from a chart and a diagnosis. The person disappears behind the paperwork.
That purpose is not in dispute. What is in dispute is whether the LOI, as conventionally designed and delivered, accomplishes it.
What I Have Watched Happen
For many years, I recommended the Letter of Intent to every family I worked with. I believed in the concept — that a parent's knowledge about their child should be documented and carried forward. I still believe in the concept. I included a sample LOI form in every estate planning binder I delivered. In the eighties and nineties, the fillable Word document went on a CD. Later, a flash drive. The delivery medium changed three times over thirty years. The format never evolved at all.
Then I started paying attention to what happened after the binder went home.
Parents would come in for their trust review, and I would ask: Did you do your Letter of Intent? The response was universal. A blank stare. Some murmuring. The binder was on a shelf somewhere. The LOI template had never been opened.
Then one day a mother gave me a different answer. "No," she said. "That is a stupid idea. The Letter of Intent is useless and outdated the minute I write it, so why do one at all."
I had no valid response. She was right. So I thought about it, and I stopped giving that advice.
In all my years of practice, across thousands of families, I can recall only one client who actually came in with a completed Letter of Intent. She showed me the document — fifteen pages, printed, robust with specific details about her non-verbal son with autism. Then she said: "Can you shred this, right now? I don't want to walk out of here and die and have anyone read this. He was twelve when I wrote it. He is seventeen now. Things are totally different. This would be the worst thing for him."
Two mothers. One who refused to start because the format was broken. One who finished and wanted it destroyed because the format was broken. The question was whether the data confirmed what I was watching.
It did, at every stage.
Completion: Most Parents Never Finish
A 2005 MetLife survey of 1,718 parents of children with disabilities found that 84 percent had not written a Letter of Intent. A follow-up study in 2011, surveying 1,004 parents, found that completion had risen to 23 percent — meaning 77 percent still had not completed one. Even with that improvement, the LOI remained one of the least-completed planning tasks, behind identifying a guardian, writing a will, planning housing, and setting aside money (MetLife, 2005; 2011).
A 2018 peer-reviewed study by Meghan Burke, published in Intellectual and Developmental Disabilities, surveyed nearly 400 parents of individuals with IDD (ages 3 to 68) and found that only 3.6 percent had completed a comprehensive set of future-planning tasks that included writing an LOI. The most common single step was locating an attorney, at roughly 58 percent. Barriers cited by parents included lack of available services (61 percent), cost, time, and stress (Burke, 2018).
The reasons are not mysterious. Parents of children with IDD are managing medical appointments, service coordination, school transitions, behavioral support, benefits paperwork, and the demands of daily care. The LOI asks them to stop, sit down, and produce a comprehensive written record of everything they know — with no structure beyond a blank template, no guidance on what matters most, and no system for keeping it current. The professional advice assumes the barrier is awareness. The evidence says the barrier is capacity.
Maintenance: No One Updates It
Every professional source instructs parents to update their Letter of Intent annually. Some recommend updates every six months. All treat this as straightforward best-practice advice.
I have not been able to find a single published study measuring whether parents actually do it.
No survey has reported what percentage of LOIs are updated within a year of being written. No study has measured the average age of information in an LOI at the time it is used. No research has tracked how quickly the content of an LOI diverges from the child's actual circumstances.
This gap matters because the LOI records dynamic categories: current medications, active providers, daily routines, behavioral strategies, communication methods, service authorizations, and housing arrangements. Any of these can change in a month. A child who transitions from school to adult services will see most of these categories turn over within a year.
The professional advice treats annual updating as a maintenance task. In practice, it is closer to a full rewrite. The conventional LOI format — a Word document, a PDF, a paper letter — does not separate what has changed from what has not. Updating means re-reading the entire document, identifying what is stale, rewriting those sections, and re-distributing the new version to everyone who holds a copy. For an already overwhelmed parent, that is not maintenance. That is a recurring project with no institutional support.
The mother who wanted her son's LOI shredded had experienced this firsthand. A comprehensive document, produced with real effort, about a twelve-year-old — rendered not just useless but dangerous five years later, because a non-verbal seventeen-year-old is not the same person as a non-verbal twelve-year-old, and someone following that document could make serious mistakes.
Point of Need: Nobody Can Find It
The entire premise of the Letter of Intent is that it will be available, accessible, and useful at the moment of crisis — when a parent dies, becomes incapacitated, or can no longer serve as the primary coordinator of their child's care.
I have not been able to find any published research studying what happens at that moment.
No study has measured whether LOIs are located by successor decision-makers. No study has measured whether they are read. No study has examined whether guardians, trustees, siblings, or residential providers rely on the information in an LOI when making care decisions. No study has compared transitions where an LOI existed to transitions where one did not.
Professional materials assume the LOI will be stored with the will and trust documents, and that the designated successor will know to look for it. In thirty years of practice, I can tell you that assumption fails routinely. Families store documents in different places. Successors are often overwhelmed by the crisis itself. The LOI, if it exists, may be in a filing cabinet the successor has never opened, in a format they cannot easily navigate, containing information that may no longer be accurate.
The LOI is a document whose claimed value arises almost entirely at a crisis point, yet no one has studied that crisis point.
Outcomes: No Evidence It Works
Across the medical, social-work, and disability-studies literature, I have not been able to find any published research demonstrating that the existence of a Letter of Intent improves post-parent outcomes for people with IDD.
No study has measured whether an LOI improves care continuity after a parent's death. No study has measured whether it reduces placement disruptions. No study has examined whether it improves quality of life for the person with IDD. No study has assessed whether trustees or guardians make better decisions when an LOI is available.
Professional sources frequently assert that the LOI will preserve continuity, reduce trial and error, and guide future caregivers. The Special Needs Alliance, for example, says that compiling the information may increase the likelihood of good choices. These are reasonable assertions. They are not evidence.
The Letter of Intent has been recommended by virtually every attorney, financial planner, and advocacy organization in the IDD space for decades. In all that time, no one has tested whether it works.
What the Evidence Pattern Shows
The empirical record makes it hard to argue that the traditional LOI, as designed and delivered, is working. Professionals overwhelmingly recommend it. Families overwhelmingly do not complete it. When researchers rank planning behaviors, the LOI sits at the bottom of the list — below writing a will, below identifying a guardian, below setting aside money. And among the small number of families who do complete one, no study has established that it is maintained, located at the point of need, or associated with better outcomes.
That pattern suggests a tool–reality mismatch rather than a simple awareness or motivation problem. If the only barrier were awareness, the decades of professional recommendation would have moved the numbers further than they have. If the only barrier were motivation, the LOI would not consistently rank below planning tasks that are objectively harder — like funding a trust or identifying a successor guardian. Parents are not failing to complete the LOI because they do not care. They are failing to complete it because the format does not fit the life they are living.
The next empirical step the field needs is straightforward: a study that asks parents directly why they do not complete LOIs and tests "this format does not fit our life" as a primary hypothesis — rather than treating non-completion as generic resistance to planning. That study does not exist. Until it does, the professional consensus is recommending a tool while lacking basic evidence about why the people it is designed for are not using it.
Why the Format Fails
The LOI asks a static document to perform the function of a dynamic, longitudinal knowledge-management system. That is the structural problem, and it cannot be fixed by trying harder, writing more, or updating more often.
The LOI records information that changes continuously — in a format that requires a complete rewrite to stay current. It assumes the document will be maintained annually — when no evidence suggests parents do so. It assumes the document will be found at the moment of crisis — when no evidence suggests it is. It assumes the document will improve outcomes — when no evidence supports that claim.
The professionals who recommend LOIs implicitly acknowledge this tension every time they urge annual updates, suggest involving future caregivers in the review process, and describe the document as "living." A living document, by definition, is one that changes. But the format they recommend — a letter, a Word file, a PDF — is not designed for change. It is designed for storage. The result is a tool that captures a snapshot and calls it a plan.
Even if the Letter of Intent worked as designed, it would still operate within a planning framework built for a single event — parental death — rather than the dozens of living transitions where knowledge actually breaks down. Direct support professional turnover runs 37 to 50 percent annually (National Core Indicators; ANCOR, 2025). That means roughly half the staff who know your child at the start of the year may be gone by the end of it. Every departure is a knowledge-transfer event that happens while you are alive, present, and exhausted. The LOI was not designed for that reality. Nothing in the standard planning toolkit was.
And the industry's proposed fix — connecting the systems that hold your child's records — cannot solve the problem either, because the knowledge you carry as a parent was never in any of those systems in the first place. The systems hold diagnoses, eligibility determinations, service codes, and functional limitations. They do not hold what calms your child down, what a good day looks like, which medications were tried and failed, or how your child communicates pain.
What Is Actually Needed
The knowledge parents carry is too important to trust to a format that most parents cannot complete, no one maintains, no one can find at the point of need, and no one has proven works.
The right question is not whether parents should capture this knowledge. Of course they should — it is the single most valuable asset in their child's care ecosystem. The question is how: in what format, through what process, supported by what system, that knowledge can actually survive the parent and serve the child across an entire lifetime.
What is needed is not a better letter. It is a different kind of instrument — one that can hold what a parent knows, keep it current as the child's life changes, and deliver the right knowledge to the right person at the right time. Not once, at a crisis point. Every time a new person enters the child's life.
What You Can Do
If you are a parent who has been told to write a Letter of Intent and has not done it — or who wrote one years ago and knows it is out of date — you are not failing at planning. You are experiencing a format problem, not a motivation problem.
Ask your planning attorney one question: What system carries what I know about my child forward — not what I own, but what I know?
Then ask your friends if they have found an answer. Look for answers in your Facebook support groups. Check the websites of the nonprofits you trust.
Two things will happen. The professionals and nonprofits will return the same answer: do a Letter of Intent. Your friends will share the honest truth — reflecting back to you the same unanswered question, with no useful answer.
That gap is real. I watched it for thirty years. And that is why I built Anya.
What Anya Does Differently
Anya is a care continuity platform developed by Tenerra, Inc. that captures what a parent knows about their child — medical, behavioral, communication, sensory, daily routines, what works, what has been tried and failed — in a structured, updatable format designed to be shared with successor decision-makers, new providers, and new staff at every transition.
The Letter of Intent captures a snapshot and stores it. Anya captures a living understanding and carries it forward. The LOI asks a parent to produce a finished document. Anya treats the parent's knowledge as something that evolves with the child and can be updated incrementally, not rewritten from scratch. The LOI sits in a drawer until someone finds it. Anya delivers what the next person needs to know, when they need to know it.
The need the LOI was designed to meet is real. The knowledge parents carry is irreplaceable. The format was wrong — not because anyone designed it to fail, but because a static document from the 1970s was never going to keep up with a changing life. The knowledge deserves better.
That mother who looked at me across the table and called the Letter of Intent a stupid idea — she was not being difficult. She was being precise. She saw what the format could not do before the data confirmed it. The evidence caught up with her. I am still trying to catch up with her.
Michael Pearce is the founder of Tenerra, Inc. and a former IDD transition planning attorney with 30 years in practice. His work on care continuity and the structural failures of conventional planning tools informs the development of ANYA, a care continuity platform at anya.tenerra.ai.
Sources
- MetLife Mature Market Institute. The Torn Security Blanket: Children and Adults with Special Needs and the Planning Gap. 2005 survey (n=1,718); 2011 update (n=1,004).
- Burke, M. (2018). Identifying the correlates and barriers of future planning among parents of individuals with intellectual and developmental disabilities. Intellectual and Developmental Disabilities, 56(2).
- National Core Indicators. State of the Workforce surveys (annual). DSP turnover and vacancy data. nationalcoreindicators.org.
- ANCOR. The State of America's Direct Support Workforce Crisis. 2024, 2025. ancor.org.
- Special Needs Alliance. "Letter of Intent." specialneedsalliance.org.
- The Arc. "Letter of Intent: Future Planning for People with Disabilities." thearc.org.