Medical Decision Making

The September 2023 issue of Helen includes an article written by Thomas F. Coleman, executive director of Spectrum Institute and legal consultant to the Alternatives to Guardianship Project. Titled “Medical Decision-Making Rights: What You Should Know,” the article offers advice for patients, parents, and providers.

  • Patients are encouraged to know their rights, to be involved in medical decisions, and to consider having a supported decision-making arrangement.
  • Parents are advised to develop a transition plan for teens as they become adults, to respect the rights of their adult son or daughter, and to an advocate to protect those rights from being violated.
  • Health care providers are told to obey the law, to offer disability accommodations to patients with developmental disabilities, and to educate medical staff about alternatives to guardianship if there are concerns about a patient’s capacity.

The article also advises professional organizations, such as AADMD and state medical, dental, nursing, hospital, psychological, psychiatric, and social work associations to convene workgroups on the decision-making rights of adult patients with developmental disabilities. They should identify or develop training materials and webinars on this topic. Annual meetings or professional conferences should include sessions to assist members acquire the skills necessary to respect the rights of these patients.

Helen: The Journal of Human Exceptionality is the official magazine of the American Academy of Developmental Medicine and Dentistry (AADMD). Helen is a launch pad for inclusive health. Persons with different abilities, family members and clinicians all take center stage.

To read or download the full article, click here.