(Autism Asperger’s Digest, February 2018: Page 30-31.) There are many uncertainties for the parents of children with special needs. My wife and I are keenly aware of this as we raise our 2 boys diagnosed with autism spectrum disorder.
Every day brings questions: Are we doing the right things? How will we handle day-to-day responsibilities? What does the future hold for our child and our family?
We rely on friends and family a great deal. Grandparents often provide insights, hands-on assistance, and unconditional love. Yet many grandparents feel hesitant to jump in fully—whether due to geographical distance, uncertainty about the diagnosis, or fear of saying the wrong thing.
The good news: Many families find these relationships thrive with simple communication and planning. Understanding the language and experience of a special needs family can bridge the gap and strengthen grandparent-grandchild bonds.
Practical Planning for Grandparents
Financial and legal considerations become important when families navigate special needs support. As a grandparent, being familiar with these issues brings you into the “inner circle” of planning for your grandchild—and informs your own estate planning decisions.
Families with a child who has special needs benefit immensely from a stable, steadfast support system. Grandparents often want to help—whether through babysitting, household support, or financial contributions to a special needs trust. Yet before creating any legal or financial documents, family members must recognize several important factors.
Here are key considerations for grandparents and extended family when setting up financial or estate plans that include a special needs child:
Participate in the Letter of Intent (LOI)
A Letter of Intent (LOI) specifies the family’s wishes—and ideally your grandchild’s wishes—regarding what an ideal life looks like. This document captures preferences, history, and habits crucial for future caregivers to understand.
Ideally, your grandchild participates in these discussions. Key questions to consider: If someone outside the immediate family provided care in the future, what would your grandchild want them to know? What are their interests? Which social connections matter most? What foods do they enjoy? Where would they like to live? What type of work might they enjoy?
Having a grandparent involved adds another perspective and lets you learn deeply about your grandchild. A well-crafted LOI captures rich detail and evolves over time—keeping you informed about changes and growth in your grandchild’s life.
This is also the time to clarify your role and boundaries. You can decide which responsibilities you’re willing to take on—custody, financial management, direct care, or none at all. It’s completely acceptable if you’re uncomfortable with certain roles or lack the expertise they require.
Many families find success outsourcing intensive tasks to professionals rather than relying solely on family. The key is to communicate openly and find a way to be involved at your comfort level.
Learn About Special Needs Trusts
An LOI can name responsible parties for specific aspects of your child’s care—from housing to medical transportation. Yet the real financial challenge emerges over time.
Therapies, medications, special diets, and later-life housing and living costs accumulate quickly. A Special Needs Trust (SNT) incorporated into your overall plan can ease financial strain on the entire family—grandparents included.
Depending on the trust structure, you can fund it in a few ways:
- First-party trusts are funded by money received directly by the beneficiary (inheritance, settlement, etc.)
- Third-party trusts are funded by family members or insurance policies
- Family members with available cash can contribute to a third-party trust
Each trust type has different allowances and restrictions. Understanding these is essential to your planning. You might also consider an ABLE account, which allows smaller amounts of savings without affecting benefit eligibility.
Keep Government Benefits in Mind
A special needs trust is such a valuable planning tool because it allows your grandchild to access inherited assets without losing government benefits. Well-intentioned family members can inadvertently disqualify a child from benefits by giving too much directly to them (SSI income limits are low).
With a properly structured trust, your grandchild can receive Medicaid and SSI alongside trust distributions. This combination provides far more support than either benefit alone.
Putting It Together
Planning for your grandchild’s long-term needs involves many moving pieces, and it’s easy to feel overwhelmed. Take a breath: this is a marathon, not a sprint. Understanding the basics of special needs financial planning will help you know what questions to ask and how your role fits into the bigger picture.
Your family doesn’t need to navigate this alone. A financial planner and estate attorney specializing in special needs work—ideally from the Academy of Special Needs Planners—can help maximize available benefits while strategically funding trusts. These professionals understand the nuances around benefits, trust structures, and community resources.
If you’d like to discuss special needs planning for your family, start a conversation with us.
