When you or a loved one has Huntington’s Disease (HD) in the picture, planning ahead isn’t just smart—it’s essential. HD isn’t just about health; it’s about protecting independence, finances, and dignity during a time when decision-making can become unpredictable. Here’s what you need to know to plan the right way.
1. Know the Difference Between a Revocable and an Irrevocable Trust
(And Why It Matters for Medicaid Protection)
Trusts are powerful tools in estate planning, but a revocable trust and an irrevocable trust serve very different purposes—and the government treats them very differently.
- A revocable trust is built for flexibility. You stay in full control of your assets while you’re healthy and capable. You can move assets in and out, change the terms, or even revoke the trust entirely. It’s a great tool for avoiding probate and managing incapacity, but it does not protect assets from Medicaid or long-term care costs. Medicaid treats assets in your revocable trust just like they’re still yours.
- An irrevocable trust is built for protection. Once you place assets into an irrevocable trust, you give up direct control. You can’t just freely move the money around anymore. Because you no longer control the assets, Medicaid often cannot count them against you—if the trust is set up properly and well before you need care.
Here’s the key:
You can’t set up a revocable trust today and later “flip a switch” to make it irrevocable for Medicaid planning. Medicaid cares about ownership history, control, and access. If you had full access to the assets when you were healthy (like in a revocable trust), Medicaid will likely still consider those assets available, even if you later “convert” the trust.
Real protection requires intentionally creating an irrevocable trust—and making sure it’s done early enough to meet Medicaid’s five-year lookback rule.
Sometimes, it makes sense to have both types of trusts working side-by-side:
- A revocable trust for day-to-day asset management.
- An irrevocable trust for shielding a portion of assets from future long-term care costs.
But they are different tools, built for different jobs. Good planning means knowing when—and how—to use each one properly.
2. Build in Language to Remove a Trustee During the “Reckless Period”
One of the trickiest parts of Huntington’s Disease is the “reckless period”—a time when judgment declines, but the person still appears functional to the outside world. Without planning, someone going through the reckless period could make financial decisions that cause serious damage.
Good planning tip:
Your revocable trust should have clear language that allows someone else to remove and replace the trustee—including you—if signs of recklessness appear. This way, if bad decisions start creeping in, someone you trust can step in and take the wheel before major harm is done. And you won’t have to rely on an expensive and traumatic guardianship proceeding in court.
3. Protect Potential Heirs with HD—Before It’s Too Late
If you have kids or other beneficiaries who might have inherited the HD gene, don’t wait for a full diagnosis before planning to protect them. Even if symptoms aren’t showing yet, your trust should automatically hold their inheritance in trust for them if there’s any question about capacity now or down the road.
How?
You can include specific language in your trust saying that if a beneficiary shows signs of HD or even if there’s a diagnosis at any time, their inheritance doesn’t go outright to them—it stays managed inside a protective trust. That way:
- They don’t lose government benefits.
- Their assets stay protected from scams, bad decisions, or future care costs.
Don’t gamble with “maybe they’ll be fine.” Plan for the “what if” now.
4. Don’t Automatically Seek Guardianship at 18 for Juvenile HD
If you have a child with juvenile-onset HD, you might assume you’ll need guardianship as soon as they turn 18. Not so fast. If your child has what’s called “Testamentary Capacity”—meaning they understand who their family is, what their assets are, and what they want to do with them—they might still be able to sign important planning documents like:
- Powers of Attorney
- Health Care Directives
- Their own Trusts
Getting guardianship when it’s not needed can be expensive, restrictive, and emotionally painful. Always explore planning options first before heading to court.
Bonus Tip: Build in Triggers Early—Because Medicaid Rules Matter
Here’s one of the biggest hidden traps: If someone starts going through the reckless period and gives away money to new friends, charities, or businesses, those “gifts” could cause a huge penalty if they ever need Medicaid to pay for long-term care.
That’s why it’s critical to build in triggering language early, before bad decisions happen. Once reckless decisions start, it may be too late to fix the situation without massive financial consequences.
Bottom Line:
If Huntington’s Disease is part of your family story, don’t wait to plan—and don’t settle for “standard” estate planning. You need strategies tailored to protect dignity, finances, and independence through every stage of life.
Want to learn more about building a real plan that fits your family? Contact our office for a no-pressure Estate Strategy Session. We’re here to help you plan in plain English, without the legalese.