Options for Independence and Decision Making
Ages 18 - 24 Years
When young people turn 18, they legally become an adult. They are granted adult rights and adult responsibilities. Most young people with heart defects (CHDs) are ready for this transition to full legal adulthood. In certain cases, young adults with heart defects may not be able to take on some or all of the responsibilities required of legal adulthood. In these cases, caretakers may be granted legal status to help support young people in making decisions and living their lives.
In this section
Supported decision-making
In supported decision-making, the young adult is considered to be able to make competent decisions about their life and care. However, the young adult would like support and consultation in making important decisions.
Sometimes supported decision-making arrangements can be informally arranged among family and friends. Other times, a written document describes the agreement, including:
the names of the young adult and the person supporting their decision-making
an indication of how long the agreement is in effect, which may be for the rest of the person's life
what kind of information the supporting person can have access to
release of information documents
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Powers of attorney
A Power of Attorney is a document that gives one person the right to make decisions on behalf of another person.
In order to have a valid Power of Attorney, both people must have the capacity to think clearly and make decisions when they sign the legal document.
"Durable" Powers of Attorney remain valid even after one person becomes incapacitated. Non-durable Powers of Attorney are only valid as long as both people remain competent decision-makers.
Some Powers of Attorney go into effect as soon as they are signed, whereas others do not go into effect until and unless one person becomes incapacitated.
Families should talk with their legal representatives, social workers, and medical team, about what kind of Power of Attorney makes sense for them.
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Healthcare proxy, surrogate healthcare decision makers
Healthcare proxies (also called "surrogate healthcare decision makers") are people who have the right to make healthcare decisions for another person.
Healthcare proxies may be assigned if a person is not able to make or express their own decisions, or if a person is expected to become incapacitated and be unable to make or express decisions in the future.
Healthcare proxies are only allowed to make decisions for the other person while the other person is incapacitated.
Families can talk with their care team if they believe they require a healthcare proxy. For young adults with developmental disabilities, both a primary care physician and a professional such as a psychologist or neurologist must contribute to the decision to establish a proxy.
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Guardianship
Guardianship is a legal arrangement in which an adult is appointed to take care of another adult, and make decisions for them.
Guardians may manage an adult's:
finances
personal care
medical care
legal issues
Guardianship can be appointed by a court when an adult is unable to take care of themself.
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How to get guardianship?
If a young person requires guardianship, a caregiver must go through their state's legal process. The process for obtaining guardianship varies by state, and is described on each state's website.
Generally, in order to get guardianship a caregiver requires:
a full evaluation that demonstrates the young person's capabilities and limitations
a court petition
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Conservatorship
A conservatorship (also called "guardian of the estate") is a legal arrangement in which one person manages another adult's finances and estate. Someone may be granted a conservatorship by the court if the other person has been shown to be unable to make financial decisions that are in their best interest.
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Planning early
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Transitioning from childhood to adulthood is hard in many ways. When the young person is not able to take on full legal responsibility for themself, this process can involve extensive paperwork, court appearances, and appointments.
In order to ease the legal process, families should try to start planning early. By the time a young person is in middle school, they should be talking about what supports they may or may not need as an adult. They should seek any necessary evaluations when the young person is 16 or 17, and begin completing legal documents well before their 18th birthday.
The transition process for a young person with a developmental disability can be confusing and even overwhelming if you try to do it alone. However, you do not need to go through it alone. See below for resources to help.
These links are provided as resources only. Boston Children's Hospital and the Benderson Family Heart Center don't necessarily endorse all of the information on these sites.
This content was reviewed by a psychologist at Boston Children’s Hospital.
Developmental care is best when it is local. Families local to Boston can receive care from the Cardiac Neurodevelopmental Program (CNP) and/or the Boston Adult Congenital Heart (BACH) program. Families from other regions can use the link below to find their local care team.
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This web site, article or resource is not endorsed by, directly affiliated with, maintained, authorized, or sponsored by Boston Children Hospital. All product and company names are the registered trademarks of their original owners. The use of any trade name or trademark is for identification and reference purposes only and does not imply any association with the trademark holder of their product brand.
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