The Role of Guardianship & Supported Decision-Making in Special Needs Estate Planning
- Randy Narkir, Esq.
- Dec 4, 2025
- 7 min read
Introduction: The 18th Birthday No One Warns Parents About
For many families, turning eighteen is a milestone filled with celebration, a symbol of adulthood, independence, and possibility. But for parents of children with disabilities, the experience can sometimes feel very different. It is not that the milestone lacks meaning. It is that most parents do not realize how dramatically the law changes the moment their child becomes an adult.
When your child turns eighteen in Florida:
Doctors can stop speaking with you.
Schools will no longer share information without consent.
Hospitals require their signature, not yours.
Banks may refuse to let you help.
Government agencies like Social Security and Medicaid consider your child the sole decision-maker.
And this shift happens overnight even if your child still depends on you for their health, safety, and daily care.
Estate planning is not only about trusts, wills, or financial documents. It is also about making sure the right people have the legal authority to help your child when they cannot safely make decisions alone.
That is why guardianship, supported decision-making, and guardian advocacy matter, and why understanding the differences between them is so important.
This guide breaks them down in clear, simple, parent-friendly language so you can choose the path that truly supports your child’s needs.
1. Why Turning 18 Shifts Your Reality
Under Florida law, once a person turns 18, they are treated as a competent adult, regardless of disability. The law does not measure maturity, functioning, or support needs. It simply recognizes adulthood.
This means that parents lose automatic authority to:
Access medical records (HIPAA restrictions).
Make health-care decisions.
Manage SSI or Medicaid without additional appointments.
Handle legal or financial documents.
Attend IEP or school-related meetings without consent.
For many parents, this legal shift feels abrupt. Your child may need just as much guidance as they did the day before, but the law no longer assumes you are involved. In fact, many laws prevent your involvement, like HIPAA.
A decision-making framework can help to bridge the gap between what the law sees and what your child actually needs.
2. Supported Decision-Making: Florida’s Newest Least Restrictive Option
Supported Decision-Making (SDM) allows your adult child to keep their legal rights while choosing someone they trust to help them understand information and communicate decisions. It is the least restrictive option because your child stays in control you simply support the process.
As of 2024, updated in 2025, Florida now recognizes Supported Decision-Making Agreements under Florida Statutes. This provides a formal way for your child to authorize a supporter to:
Receive information on their behalf (including medical, educational, or mental health records).
Help them communicate with doctors, schools, agencies, and other professionals.
It’s important to understand what SDM is not.
A Supported Decision-Making Agreement:
Is not a Durable Power of Attorney.
Does not give the supporter the ability to act independently.
It cannot be used to bind your child to legal or financial decisions.
Your child always makes the final decision.
When Supported Decision-Making Works Well
SDM is a good fit when your child:
Understands information with explanation
Can express preferences
Wants independence but benefits from guidance
It gives them a voice while still giving you a way to help them navigate complex conversations.
Where SDM Has Limits
SDM does not prevent your child from:
Signing unsafe contracts
Making risky medical decisions
Spending money unwisely
Being influenced or pressured by others
If your child needs stronger protection, meaning someone must be able to step in and prevent unsafe decisions, then Guardian Advocacy or Guardianship may be a better fit.
2A. How Powers of Attorney and Health Care Documents Fit In
Another important part of planning for adulthood is understanding power of attorney and health care decision-making documents. These can sometimes be used instead of guardianship or guardian advocacy—or they can work alongside Supported Decision-Making to give your adult child support while keeping their rights intact.
They cannot be used once guardianship or guardian advocacy is in place, because the court-appointed decision-maker automatically overrides these documents.
Durable Power of Attorney (DPOA)
A Durable Power of Attorney allows your adult child—if they have the capacity to understand what they are signing—to appoint someone they trust to help with legal and financial matters.
With a valid DPOA, an agent may:
Assist with bank accounts and financial transactions
Communicate with government agencies
Sign certain legal documents
Help manage benefits or paperwork connected to a Special Needs Trust (when appropriate)
A DPOA can be a complete alternative to guardian advocacy or guardianship for young adults who understand the concept of delegating authority. This eliminates the need for court involvement.
But it has limits:
Your child must have enough capacity to knowingly sign it
It does not remove any of your child’s rights
It does not prevent unsafe decisions
It becomes ineffective if guardianship or guardian advocacy is later established
Your child could revoke this document at any time
For many families, a DPOA paired with Supported Decision-Making provides a strong, rights-respecting structure.
Health Care Surrogate & HIPAA Authorization
A Designation of Health Care Surrogate and HIPAA Authorization allow your child to name someone to:
Access medical information
Communicate with doctors
Help make health-care decisions if they cannot do so on their own
These documents can replace the need for a guardian advocate for medical matters when your child can understand and sign them.
But again, if guardianship or guardian advocacy is established, these documents are no longer operative. Additionally, your child could revoke the documents at any time.
When Powers of Attorney Are Not Enough
These documents may not be appropriate or sufficient when your child:
Cannot understand what it means to give someone authority
Is easily influenced or pressured
Makes unsafe or impulsive decisions
Needs someone with legal power to prevent harmful choices
In these situations, guardian advocacy or guardianship may be necessary.
3. Guardian Advocacy: Florida’s Middle Path
Guardian Advocacy is unique to Florida and exists only for individuals with developmental disabilities, which include but are not strictly limited to:
Autism.
Intellectual Disability.
Cerebral Palsy.
Spina Bifida.
Down Syndrome.
Phelan-McDermid Syndrome.
(Developmental Disabilities are defined under Florida Statutes § 393.063.)
Guardian Advocacy can be an appropriate solution for the individual with developmental disabilites Advocacy can be an appropriate solution for the individual with developmental disabilities if the person lacks the decision-making ability to do some, but not all, of the decision-making tasks necessary to care for his or her person or property or if the person has voluntarily petitioned for the appointment of a guardian advocate.
Why Guardian Advocacy Is Different
Unlike full guardianship:
There is no need for a court determination of incapacity.
Your child is not declared incompetent.
The court only grants the rights your child truly cannot manage.
Your child retains the rights they are capable of exercising.
Guardian Advocacy is often the best option for adults who have meaningful abilities but still require structured protection in areas of high risk.
Guardian Advocates Commonly Support With:
Medical decision-making.
Benefits management.
Financial oversight.
Residential decisions.
Signing documents.
Understanding risks.
It is flexible and less restrictive than full guardianship.
4. Full Guardianship: The Highest Level of Protection
Full adult guardianship is the most restrictive option and is used only when the adult cannot safely make major life decisions, even with support.
Under Chapter 744 of the Florida Statutes, guardianship may remove certain rights related to:
Contracts.
Financial management.
Personal decision-making.
Medical consent.
Living arrangements.
Government benefits.
When Guardianship May Be Necessary
The adult cannot understand information, even with support.
They are highly vulnerable to exploitation.
They cannot communicate consistent preferences.
They have a history of unsafe or harmful decisions.
They require significant supervision for safety.
Full guardianship is a serious step and should be considered only when less restrictive alternatives are not enough.
5. How Decision-Making Structures Interact With Special Needs Trusts
Your choice of SDM, guardian advocacy, or guardianship will directly affect how your child’s Special Needs Trust (SNT) operates.
A. Who Communicates With the Trustee
Depending on the legal structure:
The adult beneficiary may communicate directly.
A Guardian Advocate may sometimes coordinate distributions.
A full Guardian of the Property may handle financial requests on behalf of the beneficiary.
Additionally, a Guardian can act as a Representative Payee through Social Security to manage SSI and SSDI income.
Every role impacts benefit rules, distribution decisions, and trustee coordination.
B. Protecting SSI and Medicaid Eligibility
SSI and Medicaid rules treat income and resources very differently from typical estate planning.
For example:
Cash distributions can reduce SSI benefits.
Housing or food assistance may result in an in-kind support reduction.
Incorrect payments can trigger benefit suspensions.
A decision-maker who does not understand these rules can unintentionally cause benefit issues.
C. Aligning the Trustee and Guardian
A guardian (or Guardian Advocate) must understand the interaction between decisions and the trust in the following areas:
Medical decisions
Housing choices
Benefit applications
Daily support decisions
The SNT must work in concert with the decision-making framework you choose.
6. How to Choose the Right Path for Your Child
Here is a simple, clear way to evaluate your options:
Choose Supported Decision-Making If:
Your child understands decisions with guidance and wants autonomy.
Choose Powers of Attorney If:
A flexible, least-restrictive combination that preserves rights while giving your child help.
Choose Guardian Advocacy If:
Your child can make some decisions but still needs protection in key areas.
Choose Full Guardianship If:
Your child is unable to recognize risk, communicate reliably, or stay safe independently.
There is no “better” or “worse” option only the option that fits your child’s actual needs.
7. Common Mistakes Families Can Avoid
Families often run into avoidable challenges, such as:
Waiting for a crisis
Hospitals and agencies cannot legally speak to you without proper authority.
Assuming school-based recommendations apply to legal guardianship
IEP processes do not define adult decision-making rights.
Choosing a more restrictive path than necessary
Florida requires that you start with the least restrictive alternative.
Forgetting to coordinate with the Special Needs Trust
A guardian or trustee acting incorrectly can reduce benefits.
8. The Best Time to Start Planning
The ideal time to begin preparing is 6 to 12 months before your child turns 18, but families who start later can still put effective structures in place.
6–12 Months Before Age 18
Assess your child’s strengths.
Review benefits and services.
Begin exploring decision-making options.
Schedule a planning consultation.
Decide between SDM, guardian advocacy, or guardianship.
Guardian advocacy cases can be filed when a child 6 months before turning 18 (usually 2-3 months is enough).
3–4 Months Before Age 18
Begin drafting legal documents.
Collect relevant evaluations or records.
At Age 18
File guardianship (if chosen).
Execute needed medical and legal documents.
Update SSA, Medicaid, and service agencies.
Final Thoughts: Your Child’s Adulthood Should Feel Safe, Not Scary
The law may treat adulthood as a line drawn in the sand, but your child’s needs do not change overnight. They still need guidance, structure, protection, and a support system.
Guardianship, guardian advocacy, and supported decision making are not about limiting your child they are about supporting them in the way that best fits who they are.
A thoughtful, well-aligned decision-making plan, paired with a properly drafted Special Needs Trust, ensures your child always has someone advocating for their health, their safety, and their dignity.
If you are navigating this transition and want clarity on what your child truly needs, you can schedule a consultation. We will walk you through your options, review your existing documents (if you have them), and help you create a plan that genuinely protects your child’s future.
