Parenting a child with special needs means thinking ahead in ways most families never have to. You plan while you are with your child: for therapies, schools, medical care, and transitions. One of the most critical (and often most overlooked) steps is planning for your child’s future from multiple standpoints: financial, benefits, oversight or care, and the necessary funds in a cohesive and consistent manner, for when you can no longer be there for your child.
A Special Needs Trust (SNT) is one of the most powerful tools you can use to protect your child’s long-term financial security and quality of life. It’s not just a legal document. It’s a roadmap for how you want your child to live after you’re gone.
Protecting Access to Government Benefits
Many individuals with disabilities rely on government programs like Supplemental Security Income (SSI) and Medicaid to cover essentials, such as housing, food, and medical care. These programs have strict income and asset limits, usually no more than $2,000 in the person’s name.
Without a Special Needs Trust, any inheritance or financial gift given directly to your child could unintentionally disqualify your child from these critical benefits. Even if your child does not use or receive government benefits now, they may need to do so in the future.
A Special Needs Trust can help with this problem. It allows money and assets to be set aside for your child’s future without effecting the child’s eligibility for SSI, Medicaid, and other government programs. The trust owns the assets, not your child. The funds can still be used for your child’s benefit to pay for things like:
- Education and job training
- Transportation
- Caregivers
- Travel, entertainment, and hobbies
- Out-of-pocket medical expenses
- Adaptive equipment or home modifications
A Special Needs Trust can provide a safe and structured way for anyone (depending on the type of trust), such as parents, grandparents, siblings, or friends to leave money for your child. The funds are managed by a trustee (a person or institution you choose) who uses the money to support your child while essential public benefits remain intact.
A Special Needs Trust Can Create a Roadmap for Your Child’s Future
It’s important to put the right legal documents into place to help parents and caregivers reach their goal of giving their children long, happy and fulfilling lives. A Special Needs Trust is an opportunity to put your wishes in writing and determine how to fund them. It’s a way for parents and caregivers to guide and support their children when they are no longer here. For example, if the plan is for the child to live in a group setting after the parents pass, to plan for the possibility that the group setting turns out not to be a good fit, the parents may decide to keep the family home for a period of time after the child leaves for the group home, just in case the child needs to come back. This may not make financial sense, but it is one possibility the parents may choose to ensure the child’s safety and happiness. It’s this kind of in-depth thinking that creates a solid roadmap and legal protections for your child.
Many parents include a "Letter of Intent" with their estate plan, along with their Special Needs Trust. This informal document can include details like:
- Your child’s daily routines and preferences
- Their medical and therapeutic needs
- Hopes for where they’ll live and who will care for them
- Religious, cultural, or community connections you want maintained
- Tips on how to avoid meltdowns and emotionally support your child
- The values and priorities that make your child happiest
Together, the trust and letter of intent help ensure your child’s care and routines continue in the way you’ve always envisioned during a time of significant transition and change.
Peace of Mind for You - Security for Your Child
As special needs parents, we all wish that we could live forever. But by creating a Special Needs Trust, we’re helping ensure that we’re protecting our loved ones for a time when we’re not here. By setting up a Special Needs Trust, you are giving your child one final gift, and it’s one of the most loving and empowering steps you can take to protect and provide for your child.
By planning ahead now, you’re not just protecting benefits, you’re building peace of mind, stability, and a foundation of love that will carry your child forward for a lifetime.
ABOUT THE AUTHOR:
Deepak “DJ” Jeyaram is an attorney and judge with more than 25 years of experience in special needs law, healthcare, and disability advocacy. As the founder of Jeyaram & Associates, DJ focuses on special needs trusts, guardianship, NOW/COMP and Katie Beckett appeals. In addition to his legal practice, DJ serves as a part-time Judge for the Gwinnett County Magistrate Court. Most importantly, DJ is the proud father of a child with special needs, a role that fuels his passion for helping other families navigate the systems and supports their children deserve.
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