Financial Planning for a Child with Disabilities: Long-Term Security Strategies

Let’s just get this out of the way: financial planning for a child with disabilities is not for the faint of heart. It’s like trying to build a sandcastle during a hurricane—on a budget—while also filling out 30 pages of government paperwork. Welcome to my world.

I’m a mom to a daughter with Pitt Hopkins Syndrome, a rare genetic condition that impacts her development, communication, and independence. She’s nonverbal, needs around-the-clock care, and is the absolute heartbeat of my existence. But here’s what no one tells you: raising a child with significant medical and developmental needs comes with a mountain of financial decisions that affect not just today, but decades into the future.

So today, we’re diving into the long-term security strategies I’m putting in place for my daughter—and what I wish someone had told me sooner. This is about building a future where she’s safe, supported, and never left behind.

Start with Acceptance (Yes, Financially Too)

Before I could even think about trusts and savings accounts, I had to accept a brutal truth: my daughter may never be financially independent. That’s a hard pill to swallow. And for a while, I avoided financial planning because it felt like giving up on her potential.

But it’s not. Planning is love in spreadsheet form. It’s not a surrender—it’s a safety net.

Once I reframed it that way, I was able to focus. Here’s where I started.

1. Special Needs Trust (SNT): The Cornerstone

This one is non-negotiable. A Special Needs Trust (also called a supplemental needs trust) allows you to set aside money for your child’s future without disqualifying them from essential government benefits like Medicaid or Supplemental Security Income (SSI).

• It protects assets so your child can still qualify for benefits.
• You can name a trustee to manage the funds when you’re gone.
• It can pay for anything that enhances your child’s quality of life—therapy, recreation, travel, caregiving, and more.

Pro tip? Don’t DIY this. Get a lawyer who specializes in disability planning. I made the mistake of trying to piece this together from blogs and forums. Don’t be me.

2. ABLE Accounts: Think of It as a Disability-Friendly Savings Account

ABLE (Achieving a Better Life Experience) accounts are another game-changer. If your child was diagnosed with a qualifying disability before age 26, they’re eligible.

Here’s what makes ABLE accounts so powerful:

• You can save up to $18,000/year (as of 2024) without affecting SSI benefits.
• The funds grow tax-free.
• The money can be used for qualified disability expenses (housing, education, transportation, etc.).

I use my daughter’s ABLE account for day-to-day stuff like therapy copays and adaptive equipment. It gives me financial flexibility without risking her benefits.

3. Apply for Government Benefits Early

I used to think SSI and Medicaid were for “later.” Nope. Start as early as possible. These programs are critical.

• SSI: Gives monthly cash assistance for children with disabilities based on household income. When my daughter turns 18, it will be based solely on her income (which will be zero), so she’ll likely qualify.
• Medicaid: Covers things private insurance won’t—like long-term care and medical equipment.

And yes, the paperwork is a nightmare. But do it. Future-you will be grateful.

4. Get Life Insurance—For You

This one hurt. Not financially—emotionally. Because life insurance planning forced me to think about what happens if I die before my daughter. But that’s the point. I have to.

• I got a term life insurance policy large enough to fund her Special Needs Trust.
• Make sure you list the trust—not your child—as the beneficiary. Otherwise, it could mess with her eligibility for government aid.

Not fun to think about, but essential.

5. Draft a Letter of Intent

This isn’t a legal document, but it’s one of the most important things I’ve done.

A Letter of Intent is a detailed roadmap for future caregivers. It includes everything from her medical history to her favorite snacks and sensory triggers. Think of it as a user manual for your kid.

This isn’t about paranoia. It’s about peace of mind. If something happens to me, this letter gives her next guardian a fighting chance to meet her needs without starting from scratch.

6. Build a Team—You Can’t Do This Alone

I used to believe I had to be everything: the financial planner, legal expert, medical researcher, and therapist. Then I hit burnout—hard.

Now I have a team:

• Financial planner who understands disability law.
• Estate attorney to manage legal documents.
• Social worker who helps with local programs.
• Other moms who get it and text me at midnight when I’m spiraling.

This is not a solo journey. Build your village.

7. Update Your Will and Name a Guardian

This is the part that people love to avoid—but it’s crucial.

• Make sure your will names a guardian for your child.
• Set up the Special Needs Trust as a beneficiary, not your child directly.

My lawyer walked me through every possible scenario, and yes, I cried during half the meeting. But I left knowing that my daughter will never be left in the lurch.

8. Plan for Housing—Now, Not Later

Whether your child will live at home, in a supported living arrangement, or a group home—start planning now.

• Look into state and federal programs that subsidize housing.
• Learn how Medicaid waivers work in your state (some have waitlists of years!).
• Visit local options even if it feels premature.

I’ve toured a few facilities that might be options for her as an adult. And yes, I cried in the car afterward. But knowledge is power. It’s not just about finding a “place”—it’s about finding her place.

9. Educate Your Family

Well-meaning family members might want to leave money directly to your child. Please—don’t let them.

Have the awkward conversations:

• Explain the importance of directing gifts and inheritances to the Special Needs Trust.
• Share your Letter of Intent so they understand your child’s needs.

It’s uncomfortable. But it’s necessary.

10. Take Care of Yourself (Seriously)

I know, I know. Self-care feels like a joke when you’re drowning in IEP meetings, seizure logs, and sleep deprivation. But listen: you are the plan. If you break down, the whole thing does.

• Get therapy.
• Take breaks.
• Accept help.
• Say no to things that drain you.

There is no long-term security for your child without you. You are the linchpin. And your well-being matters.

Final Thoughts: Planning Isn’t Paranoia—It’s Love in Action

Look, I’m not a financial advisor. I’m just a mom in the trenches, Googling “how to afford a wheelchair van” at midnight and navigating a system that often feels like it was designed to break me. But I’m also someone who has learned, through tears and trial, that planning is the most loving thing I can do for my daughter.

So if you’re here—panicked, confused, maybe on your third cup of coffee—know this: you’re not alone. And you’re not failing. You’re fighting for your child’s future in a world that doesn’t make it easy.

Start where you are. Get one thing in place. Then another. Brick by brick, you’ll build something strong enough to outlast you.

That’s not just financial planning. That’s legacy-building.

And if no one’s told you this today: You’re doing an amazing job.