All individuals with intellectual and developmental disabilities (IDD)have the right to recognition as persons before the law and to enjoy legal capacity on an equal basis with individuals who do not have disabilities in all aspects of life (United Nations Convention on the Rights of Persons with Disabilities (UN CRPD), 2006). The personal autonomy, liberty, freedom, and dignity of each individual with I/DD must be respected and supported. Legally, each individual adult or emancipated minor is presumed competent to make decisions for himself or herself, and each individual with I/DD should receive the preparation, opportunities, and decision-making supports to develop as a decision-maker over the course of his or her lifetime.
The appointment of a guardian is a serious matter for three reasons: (1) It limits an individual’s autonomy, that is, the individual’s agency over how to live and from whom to receive supports to carry out that choice; (2) It transfers the individual’s rights of autonomy to another individual or entity, a guardian; and (3) Many individuals with IDD experience guardianship as stigmatizing and inconsistent with their exercise of adult roles and responsibilities.
The primary goals in assisting individuals with IDD should be to assure and provide supports for their personal autonomy and ensure equality of opportunity, full participation, independent living, and economic self-sufficiency (Americans with Disabilities Act, 1990, section 12101 (a)(7); Individuals with Disabilities Education Act, 2004, section 1400 (c)(1)). Each individual adult and emancipated minor is legally presumed competent to make decisions for himself or herself and should receive the preparation, opportunities, and decision-making supports to develop as a decision-maker over the course of his or her lifetime. All people with I/DD can participate in their own affairs with supports, assistance, and guidance from others, such as family and friends. People with IDD should be aware of and have access to decision-making supports for their preferred alternatives.
States should adopt a set of minimum standards for all guardians and require training and technical assistance for all guardians.
Professional guardians (those who both serve two or more people who are not related to each other and also receive fees for these services) should, at a minimum, be registered, and preferably licensed or certified by the state, either directly or through delegation to an appropriate independent professional organization. They should also have the appropriate education and skills. They should be independent from and not be receiving payment for providing other services to the individual.
Guardians shall be legally accountable for all of their decisions and other actions with respect to the individual. Their decisions and other actions must be subject to the reporting and review procedures of the appropriate state court or other agency.
Intellectual Disability (ID) is a lifelong condition where significant limitations in both intellectual functioning and adaptive behavior emerge during the developmental period (before adulthood).
Developmental Disabilities (DD), first defined in 1975 federal legislation now known as “The DD Act,”, are a group of lifelong conditions that emerge during the developmental period and result in some level of functional limitation in learning, language, communication, cognition, behavior, socialization, or mobility. The most common DD conditions are intellectual disability, Down syndrome, autism, cerebral palsy, spina bifida, fetal alcohol syndrome, and fragile X syndrome.
The acronym “IDD” is used to describe a group that includes either people with both ID and another DD or a group that includes people with ID or another DD. The supports that people with IDD need to meet their goals vary in intensity from intermittent to pervasive.
 Terminology for guardianship and guardians differs by state and can include tutor, conservator, curator, or other comparable terms.
American Association on Intellectual and Developmental Disabilities
Board of Directors
March 16, 2016
The Arc of the United States
Board of Directors
April 10, 2016
Chapters of The Arc
October 28, 2016
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