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Guardianship

Whether your child has a disability or not, when she turns 18, she is a legal adult. 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 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.
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.

What is Guardianship?

Guardianship is a legal arrangement in which a person or persons are legally approved to make choices for another person. 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 an lawyer will represent the disabled person. The parents or caregivers will be represented by a different lawyer, or they may choose to represent themselves. 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.

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.

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.

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Guardianship

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Authors & Reviewers

Initial publication: June 2017; last update/revision: January 2019
Current Authors and Reviewers:
Author: Chuck Norlin, MD
Reviewers: Gina Pola-Money
Tina Persels
Alfred N. Romeo, RN, PhD