Sponsored by Consolidated Planning Group
This post and the webinar it’s based on were made possible thanks to Consolidated Planning Group. We extend our deepest gratitude for their leadership, support, and commitment to helping families navigate the complexities of special needs financial planning.
Planning for the Journey Ahead
As the Executive Director of Joey’s Journeys—and as a parent of a child with special needs—I understand that financial planning is more than just preparing spreadsheets and budgets. It’s about protecting the well-being of your child long into the future. It’s about building confidence in the unknown.
Our mission at Joey’s Journeys is to support inclusive living, which includes long-term financial planning for families who often face both emotional and financial complexities. That’s why we partnered with Consolidated Planning Group, specialists in special needs financial planning, to host a webinar filled with real-world advice and strategic insights.
Why Financial Planning Is Critical for Special Needs Families
According to the CDC, 1 in 6 children in the U.S. has a developmental disability. While government programs like SSI and Medicaid exist to help, they rarely cover everything a child may need across their lifespan.
What’s required is early, proactive, and flexible planning to ensure your child receives care, support, and dignity—whether you’re by their side or not.
Key Planning Areas to Consider
1. Establishing a Special Needs Trust (SNT)
A Special Needs Trust (SNT) allows families to set aside money for their child’s future needs without disqualifying them from critical government assistance. Types of trusts include:
- First-Party SNT – funded with the individual’s own assets
- Third-Party SNT – funded by family or loved ones
- Pooled Trusts – managed collectively by a nonprofit organization
Learn more through the Special Needs Alliance guide.
2. Naming a Guardian and Trustee
Designating a guardian and a trustee ensures your child has both a legal advocate and a financial steward who understand their needs, values, and long-term goals. This process involves legal documentation that should be updated periodically.
3. Creating a Letter of Intent
This non-legal document provides caregivers and future guardians with detailed instructions about your child’s daily routines, likes and dislikes, medical history, education goals, and more.
Get started with this template from The Arc.
4. Using ABLE Accounts
ABLE accounts allow individuals with disabilities to save up to $17,000 per year without losing access to SSI and Medicaid. These accounts can be used for qualified disability expenses like housing, transportation, and therapy.
Explore more at the ABLE National Resource Center.
5. Understanding Government Benefits
Benefits such as SSI, SSDI, and Medicaid have complex eligibility requirements that can change over time, especially during adulthood transition. Make sure to review the SSA guidelines and consult with experts on how your financial plans may impact eligibility.
Working with Professionals Who Understand Special Needs Planning
It’s important to build a trusted team that includes:
- Financial advisors experienced in special needs planning — NAPFA Directory
- Special needs attorneys — Special Needs Alliance Directory
When legal, financial, and caregiving professionals work together, the result is a holistic, stable plan for your child’s future.
Making Room for Joy: Why Travel Should Be Part of the Plan
While this post focuses on planning, we believe in also planning for joy.
Whether it’s visiting an accessible amusement park or taking a sensory-friendly beach trip, inclusive travel offers opportunities for bonding, learning, and personal growth. Consider making travel a line item in your trust or savings plan.
Note: Our travel resource page is currently under development. In the meantime, feel free to reach out to our team directly for travel support.
Stories from the Community
“After opening an ABLE account and setting up a trust, I finally felt like I was building something lasting for my son. I wasn’t just reacting—I was preparing.”
— Jessica M., Joey’s Journeys Community MemberWant to inspire others? We’re gathering stories from parents who’ve taken financial steps toward peace of mind. [Community submissions coming soon.]
Summary: Empowerment Through Planning
Take these steps today:
- Set up a Special Needs Trust
- Open an ABLE Account
- Name a guardian and trustee
- Document your wishes
- Work with specialized professionals
Remember: Planning isn’t just financial. It’s emotional, protective, and empowering.
Special Thanks to Our Lead Partner
At the top of our partner list is Consolidated Planning Group. They organized the foundational webinar for this post and continue to lead in delivering critical support for families of children with special needs. Their dedication makes meaningful planning accessible for everyone.
Help Us Continue This Work
Joey’s Journeys is a nonprofit on a mission to build a more inclusive future. Here’s how you can help:
- Donate to support education and advocacy (donation page launching soon)
- Share this blog with other families, educators, and advocates
- Reach out if you know an organization or partner aligned with our mission
“With the right plan and the right support, families can focus less on fear—and more on hope.”
