Helping With Huntington’s

For several years now, The Law Offices of Jeffrey G. Marsocci, PLLC has been working with a fantastic charitable organization called HD Reach and assisting clients with Huntington’s Disease (commonly referred to simply as HD). In many cases, we have also assisted their families with estate planning, but in other cases it is also integrated Medicaid planning for long-term care.

I will go through several big lessons we’ve learned over the years when working with clients with HD and their families, but first I want to put out that there is an event coming up to help HD Reach on Tuesday, October 15, 2024 at Hi-Wire Brewing in downtown Durham (800 Taylor Street, # 9-150, Durham, NC 27701 from 6 to 8:30 p.m.) to raise awareness around HD as well as publicize their upcoming golf tournament. If you can, please join us! You can RSVP here. Now on to the lessons learned…

Lesson 1: There is a very specific “reckless” phase of Huntington’s Disease when people afflicted with HD begin to make poor decisions regarding finances, relationships, and preserving their own health. This often makes estate planning with a revocable living trust more critical than the average estate case. This is because someone can start out as the Trustee of their own revocable living trust and maintain control of assets as long as they are competent.

However, the reckless phase of HD does not make someone incompetent under the legal standards of competency. This means that they can buy a new $50,000 car for their “best friend” they met just a week ago, and spend their money without any regard for the future. That is why my firm crafted specific language mandating removal of a person with HD from being their own trustee (although they remain the beneficiary) once they enter the reckless phase even though they are still legal competent. This means that the successor trustee can step in, the trust terms become irrevocable, and now the trustee can control the trust assets for the benefit of the person with HD.

Lesson 2: We often see families wanting to support their loved one financially, even through their estate planning. However, this needs to be looked at in terms of tightly locking up and restricting inheritances to other family members because any direct access to an inheritance or gift risks disqualifying them from Medicaid and other public programs. When we are meeting with clients who have a child with HD, in addition to securing their own plan we need for them to bring in or counsel the extended family on the possible implications of directly gifting or leaving inheritances. And because HD is genetic, it is possible that other family members may be diagnosed in the future so plans need to be monitored and updated as needed.

Lesson 3: There is a lot of bad advice out there regarding guardianship, and, unfortunately, banks and financial institution personnel are notorious for this. When we discuss planning with parents of adult children with HD, or who are turning 18 soon, the bank typically tells the parents that there will be account access issues because their child is an adult and they will no longer be able to handle transactions. This is when the parent asks what they can do. Well-trained staff will tell them to speak to an attorney. In other cases, they tell the parent that the bank will accept their instructions if they “go down to the courthouse” and apply for guardianship, it is “a simple process.” Depending on the state and county, it may very well be an easy process to get However, it is an entirely different thing when the parent needs to file accountings with the court, justify expenses, and sometimes even ask permission for spending money on larger items. Basically, it’s an ongoing probate court proceeding that will become an expensive, frustrating, and time-consuming process for most people just so the bank can get that piece of paperwork showing you have guardianship. In addition, this process also necessarily strips away the adult child’s right to handle any kind of financial process and banking on their own because it has been taken away in the guardianship proceeding. Instead, if the adult child is legally competent, they can simply execute their own health care and financial power of attorney documents that grant a parent or other trusted person the same authority without giving up their own ability to make decisions for themselves. It is a far easier and simpler process, but too many families jump to the guardianship process because the bank suggested it.

There are plenty of alternatives and choices in planning ahead for individuals and families dealing with Huntington’s Disease, but it’s important to make sure that all of the options and potential circumstances are review before taking action. One of the great resources in our area is HD Reach, and if you or someone you know is dealing with HD, they can provide you with resources, service referrals, and, above all, information.

In the meantime, if you want more information or just want to join us for a good time, come to the HD Reach event on Tuesday, October 15, 2024 at Hi-Wire Brewing in downtown Durham (800 Taylor Street, # 9-150, Durham, NC 27701 from 6 to 8:30 p.m.), and if you can, please RSVP here.