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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.

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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

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.

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.

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.

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:

  1. a full evaluation that demonstrates the young person's capabilities and limitations

  2. a court petition

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.

Planning early

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.

Andreasian, K., Chin, N., Glen, K. B., Haroules, B., Hermann, K. I., Kuns, M., ... & Weinstein, N. (2014). Revisiting SCPA 17-A: Guardianship for people with intellectual and developmental disabilities. CUNY L. Rev., 18, 287.https://heinonline.org/HOL/LandingPage?handle=hein.journals/nyclr18&div=17&id=&page=
Jameson, J. M., Riesen, T., Polychronis, S., Trader, B., Mizner, S., Martinis, J., & Hoyle, D. (2015). Guardianship and the potential of supported decision making with individuals with disabilities. Research and practice for persons with severe disabilities, 40(1), 36-51.https://journals.sagepub.com/doi/abs/10.1177/1540796915586189
Millar, D. S. (2013). Guardianship alternatives: Their use affirms self-determination of individuals with intellectual disabilities. Education and training in autism and developmental disabilities, 291-305.https://www.jstor.org/stable/23880988?casa_token=VCLWJjyWnHYAAAAA%3ACKONE4PwPahqYX65j9RAPxbuXzBq9UGKSxM4Jt7oGTag8MiM8pEQVsvB3MEY2JjdcWiPpPTZsN0YM92Ca52u3_kkSaZ9Jk8DUBTkFjBmAr0movnECkg
Payne-Christiansen, E. M., & Sitlington, P. L. (2008). Guardianship: Its role in the transition process for students with developmental disabilities. Education and Training in Developmental Disabilities, 3-19.https://www.jstor.org/stable/23879740?casa_token=J8jehllzvpcAAAAA%3ATkgLfbIYG8gVTFw3aE60TgQUsnSHAjFA2_7by2cK5YTPRQD51l6vcQMDAnDluDTnHkkqr7XvnjnoT19ahwMkkUfgD5fuxhEOA5kxupuNN6nrUbRtR48
Sarkar, T. (2015). Intellectual and developmental disability: Transition to adulthood and decision making process. International Journal of Child Health & Human Development, 8(4).https://web.p.ebscohost.com/ehost/detail/detail?vid=0&sid=7deb7553-4ff2-4956-9e0e-f991a1c8b781%40redis&bdata=JnNpdGU9ZWhvc3QtbGl2ZSZzY29wZT1zaXRl#AN=110843113&db=rzh
Zietlow, K., Dubin, L., Battles, A., & Vitale, C. (2022). Guardianship: A medicolegal review for clinicians. Journal of the American Geriatrics Society, 70(11), 3070-3079.https://agsjournals.onlinelibrary.wiley.com/doi/full/10.1111/jgs.17797

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