Most families complete special needs planning once and put the documents in a drawer. The trust gets funded. The will gets executed. The letter of intent gets written. Then life moves on.

Here's what happens next: your child's needs change. The trustee you named moves to another state. Medicaid eligibility rules shift. Your life insurance policy lapses. The emergency contacts in your letter of intent are outdated by three years.

Your plan was correct when you created it. It's not correct now. And unless you're reviewing it annually, you won't know until it's too late.

Review Trust Language and Structure

Start with the trust document itself. Not to reread every page, but to verify that the structure still matches your child's current situation.

First-party vs. third-party distinction: If your child received a settlement or inheritance since the trust was created, that money can't go into a third-party trust. You'll need a first-party trust with Medicaid payback language. If you haven't set one up yet, this is the flag that tells you to call the attorney.

Trust provisions and distribution standards: Read the section describing how and when the trustee can make distributions. Does it still reflect what your child needs? If the trust was drafted when your child was young and non-verbal, but they're now a working adult with partial independence, the original language may be too restrictive or not restrictive enough.

Remainder beneficiaries: Who gets the remaining funds when the trust terminates? If you named siblings as remainder beneficiaries and one has since had financial or substance abuse issues, you'll want to update that designation.

Annual review isn't about rewriting the trust every year. It's about catching the gap between what the document says and what your family looks like now, so you can fix it before the document is needed.

Evaluate Trustee Performance and Availability

The person you chose as trustee was the right choice when you made it. That doesn't mean they're still the right choice now.

Are they still available? People move. They take jobs in other states. They develop health problems. If your named trustee is no longer local or no longer capable of serving, you need a new one. Don't wait until the trust is active to find out they can't do it.

If the trust is already active, how are they doing? Review distributions from the past year. Are they responsive? Are they making decisions that serve your child's interests, or are they overly cautious to the point of undermining the trust's purpose? A trustee who refuses every reasonable distribution request because they're worried about benefit eligibility is a problem. So is one who approves everything without checking.

Is your backup still viable? Most trust documents name a successor trustee. Review that person's situation annually. If they're aging, experiencing health issues, or dealing with their own family crises, they may not be in a position to step in if needed.

If the trustee situation has changed, update the trust document. If you're relying on a corporate trustee, verify they're still in business and that your contact information is current in their files.

Update the Letter of Intent

Your letter of intent is the document that matters most when something happens to you. It's also the one most likely to be out of date.

Current routines and preferences: Does the letter reflect how your child lives now? Daily schedule, meal preferences, communication methods, sensory sensitivities all change over time. If the letter describes a child who needs total assistance but your child now manages some tasks independently, update it. Future caregivers need to know what's current.

Medical information: New diagnoses, medications, allergies, and specialists should be added as they happen, not five years later. Include dosages, timing, and any side effects that caregivers should watch for.

Contact information: This is the most commonly outdated section. Doctors move. Therapists retire. Neighbors you listed as emergency contacts sell their houses. Go through every name and number. If you can't verify it's still accurate, remove it or replace it.

Legal decision-making status: If your child turned 18 and you put guardianship, power of attorney, or supported decision-making in place, the letter needs to document that. Include copies of any relevant court orders or signed agreements.

Updating your letter of intent doesn't require a lawyer. You can revise it yourself. Just make sure the updated version is stored with your other estate documents and that future caregivers know where to find it.

Verify Benefit Eligibility and Income Limits

Government benefit rules change. Income and asset limits get adjusted. If your child receives SSI, SSDI, Medicaid, or housing assistance, annual review means checking whether they're still eligible under current rules.

SSI asset limits: The individual resource limit for SSI is $2,000. If your child has an ABLE account, up to $100,000 in that account doesn't count toward the limit. But anything above $100,000 does. If the ABLE account balance has grown past that threshold, your child could lose SSI eligibility. Check the balance annually.

Income changes affecting benefits: If your child started working or increased their hours, their income may now affect benefit eligibility. SSI has earned income exclusions, but there's still a point where additional income reduces or eliminates the monthly benefit. Run the numbers to make sure you know where they stand.

Medicaid eligibility tied to other benefits: In most states, if your child loses SSI, they lose Medicaid too. If income or asset changes are putting SSI at risk, the downstream effect on healthcare coverage is the bigger problem. Plan for it before it happens.

Changes to housing assistance or SNAP: These programs have their own income and asset rules. If your family's financial situation has changed, or if your child is now living semi-independently, their eligibility may have shifted. Annual review catches it before the agency does.

Don't assume benefits will continue indefinitely just because they were approved once. Recertification requirements, rule changes, and income shifts all create eligibility risks. Check every year.

Review Funding Mechanisms

Special needs trusts don't fund themselves. Most families use life insurance, but the policy you bought five years ago may not be serving its purpose anymore.

Is the policy still active? Premiums get missed. Policies lapse. If you're relying on life insurance to fund the trust and you haven't confirmed the policy is current, check it now.

Is the coverage amount still adequate? When you bought the policy, you estimated how much your child would need. Has that estimate changed? If care costs have increased, if your child's life expectancy has been revised, or if the trust is now covering additional needs, the original death benefit may no longer be enough.

Is the trust named as beneficiary? If you updated the trust document but didn't update the beneficiary designation on the policy, the death benefit won't go to the trust. It'll go to whoever is listed on the policy. Verify the beneficiary designation matches your current trust.

Other funding sources: If you're funding the trust through your will, verify that the language in the will matches the current trust document. If you've been making annual gifts to the trust, confirm those gifts are being tracked correctly for tax purposes.

Annual review of funding isn't about increasing coverage every year. It's about making sure the funding mechanism you've set up still works.

Check Legal Decision-Making Arrangements

If your child is approaching 18 or recently turned 18, legal decision-making status is a moving target.

Guardianship review: If you have guardianship, most states require annual reports to the court. Use that deadline as a forcing function to review whether guardianship is still necessary or whether less restrictive alternatives like power of attorney or supported decision-making could work now.

Power of attorney documents: If your child signed a power of attorney while they had capacity, verify the document is still valid and that the appointed agent is still willing and able to serve. Some POA documents expire after a set number of years. If yours does, check the expiration date.

Supported decision-making agreements: These are newer and less formalized than guardianship, but they still require documentation. If your child is using a supported decision-making model, review the agreement annually to make sure the supporters listed are still involved and that the arrangement is working as intended.

Legal decision-making isn't one-size-fits-all, and it isn't static. What made sense at 18 may not make sense at 25. Annual review gives you a structured opportunity to ask whether the arrangement still serves your child's interests.

Document Changes and Store the Updates

Reviewing your plan doesn't do much good if you don't document what you found and store the updated information where it can be accessed.

Create an annual review log: One page, dated, listing what you checked and what changed. "Verified life insurance policy active, premium current. Updated letter of intent with new neurologist contact info. Confirmed ABLE account balance under $100,000." This log becomes part of your estate file.

Store updated documents with the originals: If you revised the letter of intent, print it and put it with your will and trust documents. If you changed a beneficiary designation, keep a copy of the confirmation. Future caregivers and trustees need access to the current versions, not the originals from ten years ago.

Share updates with relevant parties: If you changed the trustee, tell the new trustee. If you updated emergency contacts in the letter of intent, let those people know they're listed. If you revised trust language, make sure your attorney has a copy of the executed amendment.

Annual review only works if the results of that review make it into the documents that matter.

When to Call the Attorney

Most of what's on this checklist you can handle yourself. Updating a letter of intent, verifying a life insurance policy, checking benefit eligibility: none of that requires legal help.

But some changes do. If trust language needs to be revised, if you're adding or removing a trustee, if your child's legal status changed in a way that affects the trust structure, call the attorney. Don't try to modify the trust document yourself.

The goal of annual review is to catch the problems early, when fixing them is straightforward. Waiting until the trust is active and something's broken is the expensive version of this conversation.

Frequently Asked Questions

How long does an annual review take?

Most families can complete the checklist in two to three hours. Updating the letter of intent takes the longest. Verifying benefit eligibility and reviewing insurance policies is faster.

What if I find a problem I can't fix myself?

Document it and bring it to your estate planning attorney. The point of annual review is to identify issues before they become crises. Don't wait.

Do I need to review every year if nothing has changed?

Yes. Even if your child's situation is stable, benefit rules change, trustees age, and documents become outdated. Annual review is the forcing function that prevents you from assuming everything's fine when it isn't.

Should I involve my child in the annual review?

If your child is capable of participating, yes. They should know what's in the letter of intent, who the trustee is, and what the plan covers. This isn't about handing them the full legal file, but they should understand the basics.

What if I skipped several years and haven't reviewed the plan in a long time?

Start now. Work through the checklist as if this is your first annual review. Document what's current, flag what needs updating, and fix what you can. Then put next year's review on the calendar.