"Who Will Take Care of Her When We're Gone?" Planning the Next Caregiver for an Adult Child With a Disability

Examples in this article are illustrative composites and do not describe any actual client or matter.

Future caregiver planning in Florida is the question behind every other part of a special needs plan. Parents of an adult child with a disability often carry it for decades: who will do what we do when we can't? The honest answer is that no single document settles it. Florida law gives families several tools, some stronger than others, and each one covers a different part of the job.

Summary

Parents lose legal authority over their child at 18, so future caregiver planning starts with how decisions will be made for the adult child now. From there, it means naming successors for three distinct roles: the person who makes personal decisions (through documents the adult child signs, a guardian advocate under s. 393.12, or a guardianship), the trustee who manages money, and the caregivers who provide daily support. A will can name a preferred guardian, but a Florida court only has to consider that choice. A court-appointed standby guardian carries more weight, and it is available only once a guardian is already serving.

Context: Why This Matters

Many families have an informal succession plan: "Her brother will step in." It is often a good plan. It is also usually unwritten, untested, and missing the legal authority the brother will need on the first day he is asked to sign something.

Informal plans tend to fail at the moment they are needed most. A parent's sudden death or incapacity leaves the adult child without the person who knew everything, and the successor spends the first weeks establishing authority rather than providing care. Advance planning cannot remove the loss. It can remove much of the scramble.

Step One: Decision-Making Authority Now

At 18, Florida law treats a person as an adult regardless of disability, and a parent's authority as natural guardian ends. The question becomes which tool, if any, the adult child needs. Florida courts must consider less restrictive alternatives before appointing a guardian, so it makes sense to consider them in the same order.

Documents the adult child signs. If the adult child has the capacity to understand and sign them, a health care surrogate designation and a durable power of attorney can name a parent now and a sibling as an alternate. These keep decision-making voluntary and outside the court system.

A supported decisionmaking agreement. Since 2024, Florida law, at s. 709.2209, has recognized an agreement letting an adult authorize a trusted person to obtain information, including medical and educational records, and help them communicate with others. It does not give that person authority to decide or act for the adult, and the statute says it is not a durable power of attorney. It suits someone who can make their own decisions with support.

Guardian advocacy. For a person with a developmental disability as Florida defines it (intellectual disability, cerebral palsy, autism, spina bifida, Down syndrome, Phelan-McDermid syndrome, Prader-Willi syndrome, or Tatton-Brown-Rahman syndrome, that began before age 18 and is a substantial handicap expected to continue indefinitely), a circuit court can appoint a guardian advocate under s. 393.12 without an adjudication of incapacity. The court delegates only the decisions the person lacks the ability to make, and the person keeps every right not specifically given to the guardian advocate. A guardian advocate may not be appointed if an existing advance directive or durable power of attorney would sufficiently address the person's needs.

Guardianship under Chapter 744. For people who do not fit the guardian advocate statute, or who need broader protection, guardianship is the more formal route. It involves an incapacity determination, an examining committee, and ongoing court reporting, and it can be limited or plenary depending on what the court finds.

Step Two: Succession for the Decision-Maker

This is where many families assume more than the law provides.

A will designation is considered, not controlling. Parents can name the person they want as guardian for their adult child in their will. When the court appoints a guardian, Florida law directs it to consider any person designated in a will under which the ward is a beneficiary. That is meaningful, and it is not binding. If the will pours everything into a separate trust, the child may not be a beneficiary of the will itself, which is one more reason not to rely on the will alone.

A standby guardian carries more weight, with a condition. Under s. 744.304, a court may appoint a standby guardian for an incapacitated adult, to take over when the current guardian dies, is removed, or resigns. Once a standby guardian has been appointed and later needs to step in, Florida law directs the court to appoint that person if qualified, unless doing so is contrary to the ward's best interests. The condition is that the petition must come from a currently serving guardian. Parents who have not been appointed as guardians cannot use this route for their adult child. The standby guardian must also petition for confirmation within 20 days of assuming duties.

The preneed guardian forms do not reach this situation. Florida's preneed guardian declaration for adults, s. 744.3045, is signed by a competent adult to name their own future guardian. The preneed declaration parents sign for their children, s. 744.3046, applies only to minors. Parents sometimes believe they have covered an adult child with one of these forms when neither applies. (An adult child with sufficient capacity might sign their own preneed declaration naming a parent or sibling, a question worth raising with counsel.)

Guardian advocacy has its own succession questions. If a parent serves as guardian advocate, the successor question should be raised with counsel early, rather than left for a new petition after the parent is gone.

Step Three: The Trustee

The person managing the supplemental needs trust needs a different skill set: investment oversight, record-keeping, trust tax filings, and a working understanding of how every distribution affects SSI and Medicaid. Name a successor trustee, and a second one. Consider whether a professional trustee or co-trustee arrangement would take pressure off a sibling who is better suited to the personal role.

Step Four: The Caregivers and the Letter of Intent

Much of what makes a parent irreplaceable is knowledge, not authority: which pharmacy, which neurologist, which foods, what calms her down, which staff at the day program she trusts. A letter of intent captures it. It has no legal force, and it should be updated every year or two. It is often the first document a successor needs.

Step Five: The Services Waiting List

For Florida families of a person with a developmental disability, the Agency for Persons with Disabilities' iBudget waiver can fund supports such as residential services and supported living. Enrollment is prioritized by statutory categories, including one for people whose caregiver is age 60 or older and there is no alternate caregiver, and within most categories applicants are prioritized by the date they were determined eligible. That makes applying early part of caregiver succession planning, even for families who do not need services yet.

Common Mistakes and Misinterpretations

Assuming the will settles guardianship. It informs the court. It does not decide.

Waiting for a crisis to seek authority. Guardian advocacy and guardianship take time. A parent's emergency is the worst moment to start.

Giving one person every role. Decision-maker, trustee, and caregiver are three jobs. Loading them all onto one sibling can overwhelm the person the plan depends on.

Choosing guardianship by default. Florida requires less restrictive alternatives to be considered. For some adults, a surrogate designation, power of attorney, or supported decisionmaking agreement is enough, and it preserves more of their independence.

Leaving the adult child out of the conversation. Where possible, the person's own preferences about who helps them should shape the plan.

Practical Guidance

Start the authority conversation around age 17. That leaves time to decide between signed documents, supported decisionmaking, guardian advocacy, and guardianship before the 18th birthday.

Ask about a standby guardian as soon as a guardianship is in place.

Name successors for every role, with at least one alternate each.

Write the letter of intent now, and update it when routines, providers, or medications change.

Apply for APD services early if your child may qualify.

Connection Back to the Pillar

This month's pillar explains why a special needs plan has to be designed as a system rather than a single document. This article covers the part of that system made of people. The trust in our first support post holds the money, and the benefits rules in our second decide how it can be used. None of it works without someone authorized, prepared, and willing to carry it forward.

Take Action

Absolute Law Group, Estate Planning & Elder Law, Ocala, Florida. This article is general information, not legal advice, and does not create an attorney-client relationship. The hiring of a lawyer is an important decision that should not be based solely upon advertisements.

If your child is approaching 18, or your family's plan for who steps in next exists only as an understanding, we can talk through which of these tools fits and in what order. Schedule a Consultation

FAQs

Can I name a guardian for my adult child with a disability in my will?

You can name your preferred guardian, and a Florida court appointing a guardian must consider a person designated in a will under which the ward is a beneficiary. It is not binding. Where a guardianship is already in place, a court-appointed standby guardian under s. 744.304 carries more weight. General information from Absolute Law Group, Ocala, Florida. Not legal advice.

What is a guardian advocate in Florida?

A guardian advocate is appointed by a circuit court under s. 393.12 for a person with a developmental disability, as defined in Florida law, without an adjudication of incapacity. The court delegates only the specific decisions the person lacks the ability to make, and the person keeps all rights not granted to the guardian advocate. It cannot be used if an existing advance directive or power of attorney sufficiently meets the person's needs.

Is a supported decisionmaking agreement the same as a power of attorney?

Not the kind most families mean. Under s. 709.2209, a Florida supported decisionmaking agreement is a limited power of attorney that only lets the supporter obtain information and help the person communicate. It does not give the supporter authority to make decisions or act on the person's behalf. The statute also says it is not a durable power of attorney, so it stops working if the person later becomes incapacitated.