Down Syndrome Awareness Month: Planning for a Secure Future with Special Needs Trusts

October is Down Syndrome Awareness Month, a time to celebrate the lives and achievements of people with Down Syndrome. It’s also a reminder of the support families need to plan for the future. Down Syndrome is the most common chromosomal condition in the United States, affecting about 1 in every 700 babies. Families caring for a loved one often face unique questions about long-term care, financial planning, and independence.

One of the most effective tools for securing that future is a Special Needs Trust. These trusts give families a way to set aside funds without jeopardizing essential benefits like SSI or Medicaid. For parents and caregivers in Kentucky, they can be a lifeline that balances independence with protection.

This guide will walk through what Down Syndrome is, why awareness matters, and how tools like Special Needs Trusts can help families build long-term security.

At A Glance

• Down Syndrome Awareness Month is about education, advocacy, and planning for the future.
• Individuals with Down Syndrome may need financial protections to maintain government benefits.
• Special Needs Trusts allow families to set aside funds without jeopardizing SSI or Medicaid.
• Elder Law Lawyers in Kentucky helps families create personalized legal plans for long-term security.

What Is Down Syndrome?

Down Syndrome is a genetic condition caused by an extra copy of chromosome 21. This extra genetic material affects development and often leads to both intellectual and physical differences.

People with Down Syndrome may share some common traits, such as certain facial features or developmental delays, but each person is unique. Many lead long and fulfilling lives, thanks to advances in healthcare, inclusive education, and community support. Today, the average life expectancy for individuals with Down Syndrome has increased to about 60 years, much higher than just a few decades ago.

Families in Kentucky have access to strong local support networks, including organizations like the Down Syndrome Association of Central Kentucky and the Down Syndrome of Louisville. These groups provide resources, education, and community events that help families stay connected.

Why Down Syndrome Awareness Month Matters

Awareness campaigns are about more than statistics. They focus on reducing stigma, celebrating abilities, and ensuring families know where to turn for help and community.

For many parents, the most pressing concerns sound like this:

• How will my loved one be cared for when I’m no longer able to provide support?
• If I leave money to them, will they lose important benefits?
• What legal tools will protect their independence while keeping resources in place?

These are not easy questions, but they are important ones. That’s why Down Syndrome Awareness Month is also about planning ahead. By learning about financial and legal strategies, families can take steps now that bring peace of mind later.

Special Needs Trusts: Protecting Benefits and Independence

A Special Needs Trust (SNT) is one of the most valuable tools for families of individuals with Down Syndrome or other disabilities.

How It Works

• Assets are placed into the trust for the benefit of the individual.
• The trust can pay for supplemental needs like education, hobbies, transportation, or therapies.
• Because the funds belong to the trust, not the individual, eligibility for SSI and Medicaid is preserved.

This structure allows loved ones to enjoy extra financial support without risking access to critical programs.

Types of Special Needs Trusts

1. First-Party SNT: Funded with the individual’s own assets, such as an inheritance or settlement.
2. Third-Party SNT: Funded by parents, grandparents, or others as part of an estate plan.
3. Pooled Trust: Managed by nonprofit organizations that pool resources for investment and management purposes while keeping each beneficiary’s funds separate.

Pro tip: Setting up a Special Needs Trust requires guidance from an attorney who understands both federal and Kentucky laws. Small mistakes in structuring or funding the trust can put benefits at risk.

Other Planning Considerations for Families

While Special Needs Trusts are often the cornerstone of planning, families should also consider other tools that support both independence and security.

Guardianships and Supported Decision-Making

In Kentucky, guardianship may be appropriate if an adult with Down Syndrome cannot make certain decisions independently. However, supported decision-making agreements can sometimes provide the right balance of help without removing autonomy.

ABLE Accounts

An ABLE (Achieving a Better Life Experience) account is a tax-advantaged savings account for individuals with disabilities. These accounts allow savings up to a certain amount without affecting SSI or Medicaid eligibility. Families often use ABLE accounts alongside Special Needs Trusts for flexibility.

Letter of Intent

A Letter of Intent is not a legal document, but it can be just as important. It outlines your loved one’s daily routines, medical history, preferences, and goals. It serves as a roadmap for future caregivers.

Estate Planning for Parents

Updating wills, powers of attorney, and beneficiary designations ensures that assets are transferred correctly. Leaving money directly to a child with Down Syndrome could unintentionally disqualify them from benefits, which is why a trust is so valuable.

Frequently Asked Questions

Why can’t I just leave money directly to my child with Down Syndrome?

Leaving money outright can cause them to lose eligibility for programs like SSI or Medicaid. A Special Needs Trust avoids this problem by holding the funds in a protected way.

Who should manage a Special Needs Trust?

Families can choose a trusted relative, a close friend, or a professional trustee. Many opt for professional management to avoid conflicts and ensure compliance with benefit rules.

What’s the difference between a Special Needs Trust and an ABLE Account?

An ABLE account is designed for smaller savings and day-to-day expenses, while a Special Needs Trust can hold larger amounts and cover a broader range of needs. Many families use both for maximum flexibility.

Plan Today for Your Loved One’s Tomorrow

At Elder Law Lawyers, we work with families across Lexington and Northern Kentucky to build legal plans that give peace of mind. If you are considering a special needs trust, guardianship, or broader estate planning, we can guide you through the process.

If you’re ready to start planning, contact us today. Together, we’ll make sure your loved one with Down Syndrome has the protection, support, and independence they deserve for years to come.

Build a Secure Future with Special Needs Trusts

At Elder Law Lawyers, we know every family’s journey is unique, especially when caring for a loved one with Down Syndrome or other disabilities. Our team helps families create Special Needs Trusts and other legal plans that protect benefits, promote independence, and ensure long-term security. 

Let us guide you through your options with compassion and expertise: contact our Lexington and Northern Kentucky offices today to start planning for your loved one’s future.