Breaking Down the Alphabet Soup of Special Needs Estate Planning: SSI, SSDI, Medicaid & Medicare
Special needs planning starts with knowledge — and that’s exactly what you’ll find here.
If you’ve ever tried to plan for a loved one with special needs, you know how confusing it can be. Between navigating government benefits, avoiding costly mistakes, and figuring out how to balance personal savings with public programs, it’s easy to feel lost.
That’s exactly why I invited Kristen Lewis, a nationally recognized expert in special needs estate planning, to join me for a special two-part series on The Death Readiness Podcast. Kristen’s deep knowledge and compassionate approach make her the perfect guide to help us untangle this complicated (but critical) topic.
Key Takeaways from This Episode
1. Traditional Estate Planning Isn’t Enough
Special needs planning is fundamentally different from traditional estate planning. As Kristen shared, about 30% of her practice involves fixing mistakes made by well-meaning estate planning attorneys.
2. Means-Tested Benefits Have Strict (and Outdated) Rules
To qualify for programs like SSI (Supplemental Security Income) and Medicaid, a person with a disability can’t have more than $2,000 in countable assets — a limit that hasn’t changed since 1989. Families who don’t understand this rule often accidentally disqualify their loved one from benefits by leaving an inheritance outright, even if they have the best intentions.
3. A “Network of Trusts” is the Gold Standard
Many people think all they need is a special needs trust — but that’s just one piece of the puzzle. A comprehensive plan includes a network of trusts, each designed to handle different types of assets (like retirement accounts, life insurance, and annual gifts). This allows families to maximize both personal wealth and public benefits — without putting eligibility at risk.
4. Wealth Doesn’t Guarantee Access to Services
One of the biggest surprises for many families is learning that some essential services simply aren’t available on a private pay basis — they’re only accessible to individuals qualifying for SSI and Medicaid.
My Professional Perspective
As someone with over a decade of experience in trusts and estates, I can confidently say that traditional estate planning education does not prepare most attorneys to handle special needs planning. That’s why I’m so passionate about sharing this information — not only for families who need it, but also for traditional estate planning attorneys who want to better serve their clients.
Whether you’re a parent, grandparent, caregiver, or estate planner, understanding these rules is essential to creating a plan that truly protects your loved one — both financially and emotionally.
Part 1 of a 2-Part Series:
This is just Part 1 of my conversation with Kristen Lewis — and trust me, you don’t want to miss Part 2, where we go even deeper into trust design, choosing the right trustee, and common pitfalls to avoid.
Listen to the full episode here:
If you have questions after listening, send me an email at jill@deathreadiness.com — Kristen and I might even do a follow-up episode based on what you’re wondering about!
