Huntington’s Disease
There’s a phrase I use when working with families dealing with progressive conditions like Huntington’s Disease: this isn’t about taking away the keys, it’s about deciding when it’s time—and making sure you don’t wait too long.
Most people initially think that phrase is about driving, but in reality, it applies to something much broader. It applies to financial control, legal authority, and the ability to make decisions that affect not just the individual but everyone around them. The challenge with Huntington’s Disease is that the decline does not happen all at once, and by the time the problem becomes obvious to everyone else, it is often far too late to fix the damage that has already been done.
Legally Competent
One of the biggest misconceptions in estate planning is the belief that legal competence is the same thing as good judgment. It is not. Legal incompetence is a very high bar that typically requires a court proceeding, medical evidence, and a formal declaration that strips someone of significant rights. It is expensive, time-consuming, public, and often emotionally difficult for families to pursue. At the same time, a person can be fully legally competent and still make decisions that are financially reckless, impulsive, or completely out of character.
This is particularly true with Huntington’s Disease, where individuals may still understand what they are signing and pass basic cognitive tests while engaging in behavior that puts their financial security—and their family’s
stability—at serious risk.
The Reckless Phase of Huntington’s Disease
This is where what I refer to as the “reckless phase” becomes so important. Huntington’s Disease can involve impulsivity, poor judgment, excessive spending, gambling, and a heightened vulnerability to manipulation. The individual may still meet every definition of Legally Competent, but from a practical standpoint, they are no longer making decisions that are in their own best interest. That creates a dangerous gap between what the law recognizes and what the family is actually experiencing. If you wait for that gap to close through a formal finding of incompetence, you are often waiting until after accounts have been drained, assets have been transferred, and irreversible decisions have already been made.
This is also where many standard estate plans fall short, even when they are properly drafted. A Will provides no protection during a lifetime because it only takes effect at death. A Durable Power of Attorney allows someone else to act, but it does not remove the authority of the person with Huntington’s Disease, meaning they can still move money, open accounts, change beneficiaries, or even revoke the document entirely. A Health Care Power of Attorney is essential for medical decisions, but it does nothing to address financial behavior while the individual is still legally competent. As a result, a family can have all of these documents in place and still have no real protection during the most financially dangerous phase of the disease.
How To Address This Issue
The most effective way to address this problem is through a properly structured and properly funded revocable living trust, but not in the way most people think about trusts. The key is not just having a trust, but how the trust defines when control shifts from the original trustee to a successor trustee. Most standard trust provisions rely on a strict definition of incapacity that requires physicians to certify that the individual is fully incapacitated, which often comes too late for Huntington’s Disease. Instead, the trust can be drafted to allow for a transition of control based on documented medical evidence that the individual is no longer able to responsibly manage financial decisions, even if they are still legally competent. This allows the successor trustee to step in at the right time, preserving assets and stability without the need for a court proceeding.
Importantly, this approach does not remove the individual from the plan or cut them off from their resources. The person with Huntington’s Disease remains the beneficiary of the trust and continues to be supported by the assets. What changes is control, not care. The successor trustee is responsible for managing the assets and making distributions for the benefit of the individual, which protects both the person and the family from the consequences of financially reckless decisions. This structure allows for intervention during the reckless phase rather than waiting until the situation escalates into a full legal crisis.
Trust Funding
None of this works, however, if the trust is not properly funded, and this is where I regularly see people receive incorrect or incomplete guidance. It is very common for banks or financial institutions to suggest that, instead of retitling accounts into the name of the trust, the client can simply name the trust as the beneficiary. That advice may sound convenient, but it completely misses the purpose of the planning. Beneficiary designations only control what happens at death; they do nothing to protect assets during a lifetime. If the goal is to prevent assets from being mismanaged or lost during the reckless phase, those assets must be owned by the trust while the individual is alive.
This often means going through the process of retitling bank accounts, investment accounts, and other assets into the name of the trust. In some cases, it may even involve changing the ownership of a life insurance policy to the trust, which is not always typical in standard planning but may be appropriate when control and protection are the primary concerns. The objective here is not simply to avoid probate, but to create a structure that actually works during the client’s lifetime, when the risks are highest.
Timing Matters
The broader point in all of this is that timing matters far more than most people realize. Families often delay these conversations because the individual is still “fine” in a legal sense, or because they want to avoid conflict or difficult discussions. Unfortunately, that delay is exactly what creates the problem. The best planning happens when the individual can still participate, understand the process, and have a voice in how their future will be handled. That is how you preserve dignity, reduce conflict, and create a plan that everyone can follow when the situation becomes more challenging.
Taking away the keys is never about punishment or control. It is about recognizing that certain conditions require a different kind of planning, and that waiting for a legal definition to catch up with reality is often too late. When estate planning is done correctly for situations like Huntington’s Disease, it provides a way to maintain independence for as long as possible while also protecting the person and their family from the very real risks that come with the disease.