Guardianship and Alternatives

Whether your child has a disability or not, when she turns 18, she is a legal adult. The law considers them an adult, capable of making decisions relating to their life and medical care. Adulthood comes with new rights, responsibilities, choices and consequences, as well as new levels of legal privacy protection (such as, doctors no longer have to and often don’t share personal health information with parents). Parents do not remain their child's legal guardian past the age of 18 unless they have gained legal guardianship of them as an adult. Individuals with intellectual disability are vulnerable and are at greater risk for harm without guardianship: police will often wait 72 hours to look if adult with intellectual disabilities wanders off or runs away.
Thinking about whether a guardianship is right for your family is a vital part of planning for your child’s future. If your teen has disabilities that do not allow him to make decisions in his own best interest, or handle/direct his own needs, you will want to look into guardianship. Guardianship gives the parent or caregiver the legal right to make choices for their child after age 18. Guardianship is a court process, and cases are only seen after the individual’s eighteenth birthday
It is recommended that the guardianship application process be started before the young person turns 18. This can take time and being set up ahead of time can help it go smoothly. This page will discuss what guardianship is, evaluating the need for guardianship, the role of the courts, and contingency planning.

What is Guardianship?

Guardianship is a legal proceeding where parents petition the court to determine the adult child is unable to manage their decisions because of incapacity. If successful, the court grants power to the parents to help make decisions and protect the adult child. It involves choices about basic needs, like food, clothing, shelter, health care, and money management. Being a guardian is a serious decision. Based on the laws of your state, a guardianship order may have to state whether the person who is deemed incapacitated (not able) will no longer have certain civil rights, such as the right to vote, drive, or marry. But these arrangements can also be flexible enough to allow your young adult a new level of independence if she is able and ready for it.

Evaluating the Need for Guardianship

Guardianship is a court-appointed role, but before any legal proceedings start, the young adult’s skills, abilities, and deficits will be measured and documented to decide whether a guardian is needed. Deciding the need for guardianship will focus on the individual's ability to make decisions and understand the results of those decisions. For many young adults with special needs, the need for a guardian is clear, but you’ll still have to petition for it. You’ll need to gather proof supporting your claim that your adult child needs a guardian, which may be as simple as getting together health records and recommendations from teachers and health care providers.

The Role of the Court/State

Once the need for guardianship is set, a court hearing is held, in which a lawyer will typically represent the disabled person. The parents or caregivers will be represented by a different lawyer, or they may choose to represent themselves. Most states require an attorney to represent the child, but some now allow parents to proceed without an attorney for their child, saving time, additional expense, and problems.
The court may assign either a "limited guardianship," to help make only some decisions (like health or financial) or "full guardianship," allowing the guardian to make all decisions needed for the person.
In some states, only a "limited guardianship" is granted unless the need for "full guardianship" is proven. Some states call for the appointment of a "conservator" who will make financial or estate planning decisions if needed, and in other states the guardian will act as conservator. The court may place an "incapacitated person" under a guardianship, conservatorship, or both. In some states, guardians must report to the court once a year about their guardianship actions, the health of the person, and what is going on with the estate
A guardian has the same powers, rights and duties that a parent has respecting a parent’s unemancipated minor. A guardian has the power to make health care decisions for the protected person and has the right to access the protected person’s health information.
The incapacitated person for whom a guardian is appointed:
  • has the right to have a physician speak about or raise any issue of concern on behalf of the person in any court hearing about the guardianship,
  • has the right to be given consideration in regards to the person’s current and previously stated desires, preference for health care and medical treatment, and religious and moral beliefs, and
  • has the right to remain as independent as possible and be granted the greatest degree of freedom possible that is consistent with the reasons for the guardianship.
The physician letter should be on the physician’s letterhead, signed, dated, and optimally stating the following: The Physician Letter Proving Incapacity for Guardianship (PDF Document 152 KB) has examples.
  • The child’s birth date
  • That the child is a patient of the physician
  • The child’s diagnosis(es)
  • A statement that the child has been or currently is participating in special education programs through the school.
  • A statement of the full-scale IQ, if possible

Contingency Planning (Planning for the Future)

It is very important for families to talk about who will have guardianship if the guardian is no longer able to serve in that role. The guardians must put their wishes in their will, so it’s of great value to plan ahead and take action to make sure there is security, safety, guidance, and care for your child’s future.

Conservatorship

Conservatorship is a legal status that can stand alone, or be used with guardianship. Conservatorship varies from state to state; however, the following is true in most cases. The court appoints a conservator or person to manage the financial and personal affairs of a minor or incapacitated person. A conservator may also serve as a guardian who is responsible for establishing and monitoring the physical care of the individual and managing their living arrangements. Additionally, the respondent’s property must be at risk of being harmed unless proper management is provided, or funds are needed for the support, care, and welfare of the respondent or those entitled to be supported by the respondent and protection is necessary or desirable to obtain or provide funds. The petitioner must be able to prove the above listed requirements by a “preponderance of evidence.” More information can be found at Alternatives to Guardianship.

Power of Attorney

Another alternative to guardianship is a power of attorney document. A power of attorney is a legal document in which one person (called the “principal”) gives to another person (the “agent,” or sometimes called the “attorney in fact”) authority to act on behalf of the principal. The person who is the agent only has the authority to act in the areas outlined in the power of attorney forms (ex: financial and/or medical, but not over all the areas of a person’s life). A power of attorney can be very broad, allowing the agent to perform a variety of tasks. For example:
  • Handling bank accounts
  • Selling real property
  • Running a business
  • Applying for public benefits
It can also be very limited and restrict the agent to one or more very specific tasks. For example, selling one specific piece of real property. The agent cannot use the principal’s assets in a way that is against the principal’s wishes. A well-written power of attorney can be a helpful legal tool to allow someone else to handle a person’s financial matters without the need for more complex arrangements like a trust or a court-appointed guardian or conservator, which removes many or all of the person’s decision-making authority. A well-written power of attorney can also help protect against possible financial exploitation and abuse. A lawyer experienced in estate planning is the most appropriate person to write a power of attorney and give advice about what is needed in specific and unique situations. There are also several power of attorney forms available on the internet but they may be too general for a specific circumstance. They may not follow the requirements of the states law, or they may not protect against financial exploitation and abuse. More information can be found at Alternatives to Guardianship.

Supported Decision Making

Supported Decision Making (SDM) is another alternative to guardianship. Rather than a guardian making decisions for an individual with a disability, SDM allows the person with a disability to make his or her own decisions with support from a trusted team. SDM allows for changes as an individual's preferences/needs change. Supported Decision Making is a codified legal process in only a handful of states at this time; find the SDM status in your state at National Resource Center for Supported Decision-Making If not a formal legal option in your state, SDM may still be a good option to use with either limited or full guardianship.
In SDM, the parent/caregiver supports the young adult, helps them to understand the situations and choices they face. This approach:
  • Teaches independence, self-advocacy, and self-determination
  • Allows the young adult the dignity of risk (the right to try and fail/succeed)
  • Is supported with my formal and informal resources
  • Requires the young adult to sign a medical release for the provider to share their medical information with their parents and other caretakers.
The young adult’s responsibilities with Supported Decision Making are to:
  • Be willing to accept responsibilities and consequences of the decisions you make
  • Be willing to write down your ideas down with the help of your supporters
  • Be willing to try new ideas and explore different possibilities
  • Be willing to look at own strengths and challenges when deciding on the supports that you will need in order to be successful
  • Be willing to work with a team of supporters to each your goals
  • Show people, that with their help you can make good decisions that will improve the quality of your life
  • Self-Determination
  • Self-Advocacy

Steps to Supported Decision Making

Step 1: Talk with your friends, family members and the people you trust about your ability to make good decisions with their support.
Step 2: Identify the areas of your life you will need support with and think about the ways your supportive team can assist you.
Step 3: Identify the supportive people in your life. Who would you choose to help you, and are they willing?
Step 4: Create an agreement with your supported team to get started on achieving your life goals. Depending on your situation, additional legal forms may need to be explored to help protect your money, health, and your personal belongings.

Resources

Information & Support

For Parents and Patients

National Disability Rights Network
Provides legally based advocacy services to people with disabilities in the United States and is a good national resource for looking into the legal rights of people with disabilities.

National Guardianship Association
The website is an excellent source of information on the rights and responsibilities of the guardian and the person in their care. The site also has resources and provides educational training and network opportunities for guardians.

Safety & Security
From Utah Parent Center Transition University - Helping families navigate Guardianship, Supported Decision-Making, Conservatorship, Power of Attorney, Estate Planning, Able Accounts, and SSI

Services for Patients & Families in Nevada (NV)

For services not listed above, browse our Services categories or search our database.

* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.

Helpful Articles

Suzanne M. Francisco, Special Education and Disability Rights Advocate & Jonathan G. Martinis, Esquire.
Supported Decision-Making Teams: Setting the Wheels in Motion.
(2017)

Authors & Reviewers

Initial publication: June 2017; last update/revision: October 2022
Current Authors and Reviewers:
Author: Mindy Tueller, MS, MCHES
Funding: The Medical Home Portal thanks the Utah Parent Center Transition University for its contribution to this page.
Authoring history
2022: update: Eric StokerA; Lisa Thornton, JDA
2017: first version: Chuck Norlin, MDA; Gina Pola-MoneyR; Tina PerselsR; Alfred N. Romeo, RN, PhDR
AAuthor; CAContributing Author; SASenior Author; RReviewer