Special Needs Trust: Checklist of Who Does What, When, and How
A step-by-step guide to what happens after the parents pass away
Families often ask us: “When we pass away, what exactly happens next — and who does what?” This page provides a clear 180-day roadmap to help trustees, siblings, and caregivers know exactly what to expect.
Important: This checklist is general guidance. Every trust is different.
Your SpecialNeedsTrustsOnline.com plan includes optional reviews and consultations to confirm your specific requirements.
🕊️ First 90 Days After the Parents Pass Away
| Who | What Needs to Be Done | When | How |
|---|---|---|---|
| Successor Trustee | Locate original trust documents, wills, powers of attorney, and Letter of Intent. | Days 1–7 | Check the family records, estate binder, attorney files, or SNTO digital backups. |
| Successor Trustee | Notify agencies (SSA, Medicaid, DDS/DMH, employer benefit plans) of the parent’s death. | Days 7–30 | Send death certificate, complete SSA reporting, and update rep-payee status. |
| Trustee + Family Members | Review the care plan or Letter of Intent: housing, daily routine, supports, behavior needs. | Days 1–30 | Use the Letter of Intent from SNTO or your own care guide. |
| Trustee | Secure assets: bank accounts, retirement accounts, life insurance, personal property. | Days 15–45 | Contact institutions, provide trust documents, retitle assets into the trust as appropriate. |
| Trustee | Evaluate benefits eligibility and ensure continuity (SSI/SSDI/Medicaid). | Days 30–60 | Confirm no assets are placed in the beneficiary’s name; direct funds to the trust. |
| Trustee | Arrange care, housing, or support transitions if needed. | Days 45–90 | Meet with service coordinators; update ISP/IEP/behavior plans. |
🌿 Next 90 Days (Days 91–180)
| Who | What Needs to Be Done | When | How |
|---|---|---|---|
| Trustee | Establish ongoing accounting and record-keeping system. | Days 90–120 | Use trust accounting software or professional bookkeeping. |
| Trustee | Begin trust-funded supports: recreation, therapies, companion programs. | Days 90–150 | Disbursements must comply with SSI/Medicaid rules — no direct cash payments. |
| Trustee + Siblings | Review long-term housing needs: remain at home, group home, supported apartment, etc. | Days 120–180 | Meet with housing agencies, case managers, and service providers to update plans. |
| Trustee | Prepare initial trust tax filings (if required). | By first tax deadline | Work with tax preparer familiar with special needs trusts. |
| Trustee | Schedule annual care plan meeting with family members and service providers. | End of 180-day period | Use SNTO Letter of Intent to guide decisions and update annually. |
💡 Why This Matters
A Special Needs Trust only works when trustees and family members know exactly what to do next. This checklist provides clarity during an emotional time and ensures the beneficiary remains supported, protected, and financially secure.