Special needs planning in Florida: a family's overview

Many people with disabilities rely on Supplemental Security Income (SSI) and Medicaid. Both are needs-based. For SSI, the resource limit is $2,000 for an individual and $3,000 for a couple (SSA POMS SI 01110.003), and Florida's Medicaid asset limit for an individual is also $2,000 (DCF Appendix A-9). Florida generally treats an SSI application as a Medicaid application too, so SSI eligibility often carries Medicaid with it (SSA POMS SI 01730.060).

An inheritance is generally counted as income in the month it arrives, and whatever is left becomes a resource the following month (20 CFR 416.1123). So a loving grandparent who leaves $50,000 directly to a grandson on SSI may cause him to lose benefits until the money is spent down. The fix is usually simple, but it has to be planned in advance.

Age 18 is also a turning point. Before then, SSA generally counts part of the parents' income and resources when deciding a child's eligibility. That "deeming" stops the month after the child turns 18 (SSA, SSI for Children), so many young adults may qualify for the first time at 18.

A special needs trust holds money for the person's benefit without counting as their resource, as long as it meets the rules. There are three main types:

First-party trust. Holds the person's own money, such as a personal injury settlement or a direct inheritance. The person must be under 65 when it's funded, and the trust must repay Medicaid at death (42 U.S.C. 1396p(d)(4)(A)). Pooled trust. Also holds the person's own money, but in a separate account inside a trust run by a nonprofit. There's no upper age limit in the federal statute, although funding one at 65 or older may be treated as a transfer of assets, depending on the program (SSA POMS SI 01120.203). Third-party trust. Holds money from parents, grandparents or others. Because it never belonged to the person, it generally doesn't need to repay Medicaid, and whatever is left can pass to other family members (SSA POMS SI 01120.200).

For most parents, the third-party trust is the core of the plan. Our estate planning page covers how each trust works, who should serve as trustee and what distributions look like, so we won't repeat that here.

An ABLE account is a tax-advantaged savings account the person with a disability can often manage themselves. Since January 1, 2026, a person is eligible if their disability began before age 46, up from 26 (SSA POMS SI 01130.740). For 2026, total annual contributions from everyone combined are generally capped at $20,000 (IRS).

For SSI, the first $100,000 in an ABLE account is generally excluded, and qualified disability expenses, including housing, generally aren't counted as income. Florida's program is run by Florida ABLE, Inc., known as ABLE United (Fla. Stat. 1009.986).

ABLE accounts and trusts often work together. The ABLE account gives day-to-day independence; the trust holds larger amounts. Federal law lets a state claim what's left at death for Medicaid it paid (26 U.S.C. 529A(f)), but Florida law says that, except as federal law requires, Florida Medicaid may not file a claim against an ABLE account (Fla. Stat. 1009.986(7)(b)).

At 18, your child becomes a legal adult. Doctors, schools and banks may stop sharing information with you unless your child signs papers or a court gives you authority. Florida offers several paths, from least to most restrictive.

Supported decision-making. Since 2024, Florida law recognizes a supported decision-making agreement. It's a power of attorney that lets a trusted person receive information, such as medical and school records, and help the adult understand options and communicate decisions, without authority to make binding decisions for them (Fla. Stat. 709.2209). The adult needs enough capacity to sign it, and it ends if they lose capacity.

Powers of attorney and health care surrogates. If your adult child can understand them, these documents let you act for them while they keep their own rights.

Guardian advocacy. For a person with a developmental disability, such as an intellectual disability or autism, a court may appoint a guardian advocate without finding the person incapacitated (Fla. Stat. 393.12). The court gives the guardian advocate only the powers the person needs help with. The petition must address whether alternatives, including supported decision-making, have been tried and why they aren't enough.

Guardianship. Under chapter 744, guardianship requires a court finding of incapacity and can remove more rights. It's usually considered only when less restrictive options won't work. Guardianship isn't one of our practice areas, but it helps to know where it fits.

A letter of intent isn't a legal document, but it's often the most useful thing a future trustee or caregiver will read. It tells them what you know: daily routines, doctors and medications, what calms your child and what upsets them, school and work history, friends, faith, foods, and your hopes for where and how they'll live. Keep it with your estate plan, and update it every year or so. Our first conversation guide has tips for starting these talks.

A careful trust can be undone by a single form. Life insurance, retirement accounts, annuities and bank accounts with payable-on-death designations pass by the form, not by your will. If the form names your child directly, the money may go to them outright. Generally, those forms should name the third-party special needs trust instead. Retirement accounts left to a trust raise technical income tax questions, so ask your lawyer and tax adviser how to word the designation.

Talk with grandparents, aunts and uncles, too. If they plan to leave something, they can name your child's trust rather than your child. Our estate planning page explains why a will still matters, and the family quiz can help you see where to start.