Planning for a Special Needs Child: Lifetime of Care

For a parent raising a child with special needs, love stretches far beyond the present moment. It asks you to imagine years and sometimes decades into a future you may not be here to see. Planning is not a choice. It becomes an act of devotion that protects your child’s dignity, safety, and joy long after your hands can no longer guide them. 

Recently, Niki Weiss sat down with Julie Hoffman-Hogan, a financial planner and advisor with New York Life, on the Digital Legacy Podcast. Julie speaks from two places at once: as a financial professional, and as a mother who has spent more than three decades planning for her son.

A Mother’s Story

Julie’s son Derek is 33 and has Down syndrome. She became his mother at just 22, while also raising a 17-month-old and with her husband deployed during the Gulf War.

From his very first days, she understood that life would look different than she had imagined. She also learned, early and largely on her own, that loving Derek meant planning for a future she might not be present to see.

Why Age 18 Changes Everything

One of the most important things Julie shared is what happens when a child with special needs turns 18. In the eyes of the law, they become an adult, even if they cannot make medical or financial decisions on their own.

At that point, a privacy law called HIPAA - Health Insurance Portability and Accountability Act, which protects the confidentiality of medical records, can keep doctors from sharing information with parents. Without the right legal paperwork in place, a parent may lose the ability to speak with their own child’s care team.

To stay involved, families often need legal guardianship or conservatorship. These are legal arrangements that give a trusted person the authority to make decisions for an adult who cannot safely make them alone. Julie encourages families to begin exploring this around age 16, well before the deadline arrives.

The Trust That Works Differently

Julie also explained a tool many families have never heard of: the Special Needs Trust. This is a specific kind of trust designed to hold money for a person with a disability.

Here is why it matters. A person receiving public benefits generally cannot have more than $2,000 in assets in their own name. If they inherit money directly, even with the best intentions, they can lose essential support such as Social Security.

A Special Needs Trust holds those funds separately, so the person stays eligible for benefits while still being provided for. Julie was clear that this kind of trust is irrevocable, meaning it cannot be easily changed once created, and that it is very different from an ordinary trust. It calls for an attorney who truly specializes in this area.

A Letter of Intent: Love in Writing

Perhaps the most moving part of the conversation was Julie’s description of a Letter of Instruction (LoI) — a document that provides practical guidance for managing someone’s affairs after death. For her son, it will serve as a road map for future caregivers, capturing his routines, medical history, support needs, and the small details that make his days good — his likes, dislikes, and what helps him feel safe. Julie described it as writing a love letter to a future caregiver. 

This document does more than express love. It gives the next guardian a real, practical guide instead of forcing them to begin from nothing.

When the Plan Has to Change

Julie’s family is living through one of those turning points right now. Derek recently began showing signs of possible early-onset Alzheimer’s, which changes the care he will need for years to come.

A plan built for a healthy, independent adult no longer fits. So Julie is revisiting his trust, reviewing life insurance, and naming successor guardians and trustees in case the people first chosen are unable to serve.

Her advice for staying steady through it all: take the emotion out where you can, put the facts in plain view, and set one piece in place at a time until the foundation feels solid.

Small Steps You Can Take Today

Julie’s biggest message was that you do not have to do everything at once. You simply have to begin.

Here are a few steps to start with:

• Take stock of where your planning stands today, and learn the rules specific to your state.

• Interview estate planning attorneys and ask directly how often they handle Special Needs Trusts.

• Begin a Letter of Intent, even a rough first draft, capturing routines, care needs, and the things that bring your loved one comfort.