Your Child Just Got a Diagnosis. Here’s What to Do First.
Right now you’re probably overwhelmed. The diagnosis is fresh, the jargon is foreign, and everyone seems to have an opinion about what you should do next. Take a breath. You don’t need to do everything today. But there are a few things that matter early — and some that can wait.
This page walks you through what to prioritize, in order, based on what hundreds of families wish they’d known from the start.
Right Now (First 30 Days)
1. Take care of yourself and your family
This isn’t a platitude. You can’t advocate for your child if you burn out in month one. Process the emotions. Lean on your partner, a friend, a therapist. The planning can wait a few weeks — your wellbeing can’t.
2. Don’t let anyone give your child money directly
This is the one financial thing that’s urgent. Well-meaning relatives may want to help with gifts or a savings account in your child’s name. If your child may ever need SSI or Medicaid, any assets over $2,000 in their name can disqualify them. Politely redirect gifts for now. You’ll set up protected accounts soon.
3. Connect with other parents
Professionals know the system. Other parents know what it’s actually like. Find your people:
- Your state’s Parent Training and Information Center (PTI)
- The Arc — 600+ local chapters nationwide
- Facebook groups organized by diagnosis
- Reddit communities (r/SpecialNeedsParenting)
Read more: Parent Journeys — questions and experiences from families like yours
Month 1-3: Learn the Basics
4. Understand the two tools that protect your child’s money
You’ll hear these terms constantly. Here’s the short version:
- Special Needs Trust (SNT) — a legal arrangement that holds money for your child without it counting against benefit limits. No cap on amount. Requires a trustee and an attorney to set up.
- ABLE Account — a savings account your child controls (or you manage for them). Tax-free growth. Up to $100,000 protected from SSI. Takes 30 minutes to open online. No attorney needed.
Not sure which you need? Our comparison guide breaks it down.
5. Open an ABLE account
If your child’s disability began before age 46 (2026 rules), they likely qualify. This is the fastest, easiest step you can take — open one online in under 30 minutes. It creates a safe place to save immediately while you work on the bigger planning.
6. Learn your state’s rules
Every state handles Medicaid, pooled trusts, and disability services differently. Read your state-specific guide to understand what applies where you live.
Month 3-6: Start Protecting Benefits
7. Apply for benefits if your child may qualify
The process is slow — 3-6 months for initial decisions, and denials are common. Starting early gives you time to appeal. Key programs:
- SSI — cash payments for children with disabilities in low-income families
- Medicaid — healthcare coverage far beyond typical insurance
- Medicaid waivers — services like personal care, respite, day programs. Waitlists can be years long — get on them now.
Full details: Government Benefits guide
8. Talk to family about how to give
Before the next birthday or holiday, tell grandparents and relatives: gifts should go to the ABLE account or (once set up) the trust — never directly to your child’s bank account. One conversation now prevents a crisis later.
Tips on having this conversation: Parent Journeys
Month 6-12: Build the Foundation
9. Start your Letter of Intent
This is the document that tells future caregivers who your child really is — routines, preferences, fears, joys. It takes 15 minutes a week over 8 weeks. Start with our section-by-section guide.
10. Find a special needs attorney
Look for CELA certification or Special Needs Alliance membership. Many offer free initial consultations. You’ll need them to set up a trust and update your will.
11. Set up a special needs trust
If you have assets to protect (life insurance, inheritance plans, savings), a third-party SNT ensures they benefit your child without destroying eligibility. Our funding guide covers how to fund it at any budget.
12. Update your will
If your will leaves anything directly to your child — change it now. Direct the inheritance to the trust instead. Make sure your spouse’s will matches.
Your Roadmap at a Glance
| When | What | Guide |
|---|---|---|
| Now | Redirect gifts away from child’s name | Funding Strategies |
| Month 1 | Open ABLE account | ABLE Accounts guide |
| Month 1-3 | Apply for SSI, Medicaid, waiver waitlists | Government Benefits |
| Month 3 | Tell family how to give safely | Parent Journeys |
| Month 3-6 | Start Letter of Intent | Letter of Intent guide |
| Month 6-12 | Find attorney, set up trust, update will | SNT Complete Guide |
A year from now, you’ll have a plan in place. Today, you just need the next step.
Written by a special needs parent. Not legal advice. Last updated February 2026.
Written by a special needs parent — not an attorney. This page is for informational purposes only and does not constitute legal advice. Laws change frequently and vary by state. Always consult a qualified special needs planning attorney for guidance specific to your situation.