As an estate planning attorney, I’m often surprised when parents of a child with special needs tell me they didn’t realize there was anything specific they needed to do to protect their child’s future. Some assume a basic will is enough. Others believe family members will “figure it out” if something happens.
If you are raising a child with special needs, planning ahead is not optional – it is essential. And the good news is that with the right planning in place, you can protect your child’s care, quality of life, and financial security without putting their government benefits at risk.
This article explains the key steps every parent should understand and why a properly designed Special Needs Trust is one of the most important tools available.
Start With Guardianship Planning
The first – and most critical – step is naming legal guardians who will care for your child if you are no longer able to do so due to death or incapacity. For families with special needs, this responsibility often extends well beyond age 18.
Putting guardianship decisions in writing provides clarity, protection, and peace of mind. Parents consistently tell me that once guardians are legally named, a huge weight is lifted – they know their child will be cared for by the right people, in the right way.
A strong plan does more than name a guardian. It also includes written instructions about your child’s routines, preferences, medical needs, and emotional care. In many cases, we help families structure plans that financially support guardians so they can continue meaningful activities the child enjoys – like regular outings, social engagement, or therapy-related experiences.
Without written guidance and support, even the most well-intentioned guardians may struggle to provide the same level of care you do today.
The Financial Catch: Supporting Your Child Without Harming Benefits
Providing financially for a child with special needs is where many families run into trouble.
On one hand, you want to leave enough money to ensure your child has access to care, comfort, and opportunities throughout their life. On the other hand, leaving money directly to a person with special needs can unintentionally disqualify them from essential government benefits such as Medicaid or Supplemental Security Income (SSI).
This is where a Special Needs Trust becomes critical.
What Is a Special Needs Trust?
A Special Needs Trust allows assets to be set aside for your child’s benefit without counting against eligibility for needs-based government benefits. The trust is designed to supplement, not replace, public benefits – paying for things like education, therapies, travel, personal care, technology, and quality-of-life enhancements.
The rules governing these trusts are highly technical and vary by state. A trust that is improperly drafted or administered can accidentally undo everything you were trying to protect. That’s why it’s essential to work with an estate planning attorney who understands both estate law and special needs planning.
How a Special Needs Trust Is Structured
When creating a Special Needs Trust, you typically serve as both the trust creator and the initial trustee while you are alive and able. Your child is named as the beneficiary, but they never receive money directly from the trust.
You also name a successor trustee – the person or professional who will manage the trust after you are no longer able to do so. To avoid conflicts of interest and reduce stress on caregivers, the trustee is often someone other than the child’s guardian.
The trustee has a legal duty to follow the trust’s instructions and use the assets solely for your child’s benefit. Because this role involves managing funds, keeping records, understanding benefit rules, and staying current with the law, many families choose a professional trustee or co-trustee to provide long-term stability and oversight.
It is also wise to name backup trustees in case the first choice is unable or unwilling to serve in the future.
How the Trust Gets Funded
There are two common ways to fund a Special Needs Trust:
- As Part of Your Estate Plan
Many families include a Special Needs Trust within their revocable living trust. In this case, the trust “springs into action” upon your death and is funded with assets you leave behind. - As a Standalone Trust During Your Lifetime
In other situations, a Special Needs Trust is created now so it can receive gifts or inheritances during your lifetime – often from grandparents or other relatives who want to help but don’t want to jeopardize benefits.
Each family’s situation is different, and the right approach depends on your assets, family dynamics, and long-term goals.
Understanding the Trustee’s Responsibilities
Once funded, the trustee’s job is to use the trust assets carefully and legally – supporting your child without interfering with public benefits.
This includes:
- Paying allowable expenses directly to providers
- Maintaining accurate financial records
- Filing tax returns if required
- Investing trust assets responsibly
- Staying informed about benefit eligibility rules
- Adjusting distributions as your child’s needs change over time
Because the role is complex and long-term, choosing the right trustee is just as important as drafting the trust itself.
Planning Now Means Peace of Mind Later
A Special Needs Trust is not just a legal document – it is a long-term care plan for your child’s life. When done correctly, it allows your child to receive the support they need, enjoy a meaningful quality of life, and remain protected no matter what the future brings.
If you have a child with special needs, the time to plan is now – while you can make thoughtful decisions and clearly document your wishes. With the right plan in place, you can replace uncertainty with confidence and ensure your child is cared for in the way you intend.
As your estate planning attorney, I can help you create a comprehensive, legally sound plan that protects both your child and your peace of mind.
At Cheever Law, APC, we don’t just draft documents; we ensure you make informed and empowered decisions about life and death for yourself and the people you love, starting with a valuable and educational Life & Legacy Planning Session. The Life & Legacy Planning Session will allow you to get more financially organized and make the best choices for the people you love. If you have already completed your estate plan, we will review that plan at your Life & Legacy Planning Session to ensure that it will work the way you intend and address any holes or gaps that may be present if circumstances have changed since you executed your plan.
To learn more about our one-of-a-kind systems and services, contact us or schedule a 15-minute introductory call today.