All people 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 people who do not have disabilities in all aspects of life. The personal autonomy, liberty, freedom, and dignity of each person with I/DD must be respected and supported. Legally, each adult or emancipated minor is presumed competent to make decisions for themselves and each person with I/DD should receive the preparation, opportunities, and decision-making supports to develop as a decision-maker over the course of their lifetime.
Over-arching Principles:
- Providing a continuum of supports from least restrictive to greater levels of assistance, which may include advocacy, Supported Decision Making (SDM), and Guardianship are the principle underpinnings of The Arc New York’s position for each of these decision-making options.
- 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 person’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 process should foster considerations for dignity of risks, benefits, and alternatives of the various options
- The principles and practices of Person Centered Planning are supported to promote and encourage self-determined lives.
- All those supporting a person with I/DD, whether they be full Guardians or chosen designees through SDM, must maintain focus on the person receiving supports and respect their wishes. Support staff are critical in maintaining this focus on the person.
- All persons assisting people with I/DD with advocacy and decision making through the various decision-making options should have access to education, training and other resources.
Guardianship:
- Guardianship gives a person or organization the legal right to make certain decisions for another person. Guardianship requires going to court and only a judge can appoint a guardian.
- A person may need a guardian if they are unable to make decisions, manage their affairs, and are at risk of harm because of serious illness, disability, dementia, or other conditions that impacts their ability to think and act clearly.
- In New York, a person with I/DD has access to two types of Guardianship:
- Article 81 Guardianship: Also known as guardianship for incapacitated adults (18+). This type of guardianship asks a judge to give a guardian only the powers necessary to meet an incapacitated person’s needs. This may include powers to manage a person’s finances and property, personal needs, or both. Note that Article 81 guardianship is also available for people with intellectual and developmental disabilities.
- Article 17-A Guardianship: This type of guardianship is for adults (18+) with an intellectual or developmental disability who need a guardian. It comes from Article 17-A of the Surrogate’s Court Procedure Act. It gives the guardian the authority to make all decisions if needed (unlike Article 81 which tailors powers to the person’s specific needs.)
- When a person has a legal 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.
- A guardian, the incapacitated person or person in need of a guardian (IP/PING) themselves, or anyone interested in the wellbeing of the person with a 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 person’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.
- 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.
Supported Decision-Making
Supported decision-making (SDM) is a process by which a person with an intellectual or developmental disability can be supported in making his, her, or their 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 I/DD should receive the preparation, opportunities, and decision-making supports to develop as a decision maker over the course of his, her, or their 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.
In 2022, S.7107-A (Mannion)/A. 8586-A (Simon) established Article 82, which recognizes that a more formal SDM process, with a supported decision-making agreement between the person with a disability (the decision maker) and their supporter(s), can provide people with disabilities the ability to make choices with the confidence, that they will be respected by others, and knowing that they will be solely responsible for their decisions.
The development of an adequate regulatory framework to operationalize this process is critical. The Arc New York seeks to ensure that there is no hierarchy between SDM, Article 17-A and Article 81 Guardianship. Article 17-A, Article 81 and SDM should never usurp the other and all should be equally acknowledged and equally funded. We view SDM as an additional approach in a wide array of options that may benefit certain individuals who are appropriate for this type of support.
It is the Position of The Arc New York That:
There is a continuum of decision-making support for people with IDD, including but not limited to formal and informal Supported Decision-Making Agreements, Article 81 and Article 17A guardianships, and the Surrogate Decision-Making Committee process. Any type of support should be offered in a way that:
- Honors each person’s wishes and sense of autonomy
- Protects each person’s civil and human rights
- Provides people with opportunities for learning and growth
- Encourages well-being and safety
- Acknowledges dignity of risk and the human reality of learning through mistakes and failures
