Options for Independence and Decision Making

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.

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.

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.