All individuals with intellectual and developmental disabilities (I/DD) have the right to be recognized as full 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. 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.
Providing a continuum of supports from least restrictive to greater levels of assistance that include advocacy, supported decision-making and guardianship are the principle underpinnings of The Arc New York guardianship program, and each of these decision-making alternatives foster consideration of risks, benefits and alternatives.
Advocacy:
- To make decisions for oneself is a core human and civil right. When someone needs help with making decisions, assistance should be tailored to that individual’s unique needs. Advocacy is essential for promoting and protecting the civil and human rights of people with I/DD and for establishing, maintaining or improving their quality of life: exercising their rights, making choices, contributing to society and living independently.
- The principles and practices of Person Centered Planning are supported to promote and encourage self-determined lives.
- All persons have legal capacity; all persons have the right to assistance in exercising that right.
- When a person has a guardian, or even a strongly vocal family member or other advocate, the organization providing services must maintain its focus on the person receiving supports. Support staff are critical in maintaining this focus on the person. (CQL)
- The guardian should take action to assist the person to petition the court to remove a guardian where guardianship is not appropriate, or where a guardianship should be tailored, or where a guardian is acting against the individual’s wishes and desires. The court can be petitioned to remove the guardian completely, to restrict the guardian’s scope, or to appoint another guardian if necessary.
- All persons assisting individuals with I/DD with advocacy and decision making, (including participants in supported decision making, family members and guardians) should have access to education, training and other resources.
Supported Decision-Making
Supported decision-making is a process by which a person with an intellectual or developmental disability can be supported in making his or her own decisions. Supported decision-making draws on our common experience of consulting or seeking assistance from others when we make decisions or choices in our own lives. Whether it is renting an apartment, buying a car, or choosing to get married, we do not make decisions in a vacuum, but rather with “support” from friends, family and/or experts of some kind.
People with intellectual or developmental disabilities also have a right to make their own choices and decisions but may need more or different kinds of support to do so. Supports may include help with accessing information that is useful or necessary for a decision, help with weighing the pros and cons, assisting in communicating the decision to third parties, and/or in carrying out the decision. But the decision should always be the person’s decision and not the supporter’s.
- A person with intellectual or developmental disabilities should receive the preparation, opportunities, and decision-making supports to develop as a decision maker over the course of his or her lifetime.
- Support may come from one or more individuals, possible family, friends, peers, neighbors or service providers.
- The individual may need assistance to identify the person or persons to assist him/her in making decisions.
- Supported decision-making can be evidenced in a written document, a “supported decision-making agreement.”
- Issues surrounding “acceptance” of decisions by medical staff, banks, etc. need to be addressed.
- Support of the individual in making his/her own decisions must be ensured. Supported decision- making does not substitute the decision of others for the decision of the person supported.
- Supported decision-making provides part of a tailored guardianship structure, providing supports in areas of decision making where a guardian decision maker is not needed.
- Need for legislative authorization and framework.
