Supported Decision-making and Supported Decision-making Agreements

The Government Law Center’s explainers concisely map out the law that applies to important questions of public policy. 

May 25, 2022, updated, August 3, 2022

Introduction

Anyone who has have ever sought advice from a friend or family member before buying a car, a pair of running shoes, or even a jar of pasta sauce, has engaged in supported decision-making.  It is part of everyday life.  Whether seeking advice of friends or ‘going it alone”, most adults don’t give their decision-making process a second thought.  Adults are presumed to have the “legal capacity” to make decisions.[1]  Legal capacity is generally understood to mean “the ‘capacity to act’, intended as the capacity and power to engage in a particular undertaking or transaction, to maintain a particular status ... with another individual, and more in general to create, modify or extinguish legal relationships”[2]  and “have those decisions legally recognized.”[3] Adults  regularly exercise their legal capacity  “unless and until a guardian is appointed [to make decisions] for them.”[4]  Individuals with developmental disabilities generally do not enjoy certainty regarding their legal capacity.[5] By the time they reach 18 years of age, their families are being pressured by schools, physicians, service providers, and other parents to “get guardianship for [their child],”[6] notwithstanding the fact that a guardianship may not be necessary,  and that “the loss of rights” accompanying it is not well understood.[7] Once a guardian is appointed for an individual, the guardian makes all the decisions and the individual is left without authority to make any decisions.[8]

The pressure on families is not surprising because the diagnosis of a developmental disability is usually interpreted as an impairment of one’s decision-making ability,[9] a view that is codified in New York’s developmental-disabilities guardianship statute,[10] and, until recently, shared across the globe.[11]

Aiming to change that perception, in 2006, Article 12 of the United Nations Convention on the Rights of Persons with Disabilities (CRPD), recognized that persons with disabilities have the right to enjoy “legal capacity” as a human right “on an equal basis with others in all aspects of life.”[12] To that end, Article 12 further stated that they should be provided with “the support they may require in exercising their legal capacity.”[13]  The supports will be unique and diverse to reflect the needs of each individual.[14] They may involve “gathering relevant information, explaining that information in simplified language, weighing the pros and cons of a decision, considering the consequences of making--or not making--a particular decision, communicating the decision to third parties, and assisting the person with a disability to implement the decision.”[15]  In such an arrangement, an individual retains decision making authority, and decisions would be made with guidance from a designated person or persons. With the impetus of Article 12,[16] recognition of the role for supported decision-making in the lives of  individuals with developmental disabilities has been growing around the world.[17]   In the United States, the American Association on Intellectual and Developmental Disabilities (AAIDD) and The Arc issued a joint policy statement in 2016 echoing the principles of Article 12,[18] and, to date, at least 15 states and the District of Columbia have enacted legislation formally recognizing supported decision-making to enhance a person’s legal capacity.[19] Following this trend, New York has enacted legislation recognizing supported decision-making and supported decision-making agreements for individuals with developmental disabilities.[20]

New York’s Supported Decision-making Legislation

Under New York’s legislation, every adult is presumed “to have the capacity to enter into a supported decision-making agreement,” unless they have a legal guardian.[21] 

Decision-makers

The legislation provides that an adult (decision-maker) “may make and execute, change, or revoke a supported decision-making agreement, if the decision-maker understands that they are making, changing, or revoking and executing an agreement with their chosen supporters and that they are doing so voluntarily.”[22]

Supporters

The supporters are the individuals chosen by the decision-maker to assist them in decision-making.[23] The supporters must respect the decision-maker’s right to make a decision, even if they disagree with the decision, act honestly and diligently, in good faith, and within the scope of the executed supported decision-making agreement.[24]  Supporters are prohibited from making decisions for the decision-maker, exerting undue influence upon them, coercing them,[25] or acting without the decision-maker’s consent.[26]

Elements of an Agreement

The  legislation requires that a supported decision-making agreement be in writing, dated, signed by the decision-maker and all their supporters, and be notarized, or witnessed by two adults who are not supporters. [27]It must list the categories of decisions for which a supporter is providing assistance and the kinds of support that each supporter may give.[28] The agreement must also contain an attestation that the supporters agree to honor the right of the decision-maker to make their own decisions, respect the decision-maker’s decisions, and,  not make decisions for the decision-maker.[29]

Effect of an Agreement

A third party must honor a decision made in accordance with an agreement that contains the elements required by the legislation, and is the product of supported decision-making facilitation or education process, as prescribed by regulations  of  the Office for People with Developmental Disabilities (OPWDD).[30]  Such an agreement must include statement to that effect[31] and the signature of an OPWDD recognized facilitator or educator.[32] In addition to the requirement that a decision made pursuant to an OPWDD sanctioned agreement be signed by the facilitator,[33] a third party asked to accept a decision made pursuant to such an agreement may require the decision-maker to attest to the fact that the decision was made in accordance with the agreement.[34] A decision made pursuant to such an agreement must be honored unless the third party has substantial cause to believe that the agreement has been revoked, the decision-maker is being victimized, or that “the decision will cause substantial and imminent physical or financial harm to the decision-maker.”[35] A decision or request made or communicated  pursuant to such an agreement may be enforced “in law or equity on the same basis as all others.”[36] A third party acting in good faith and in reliance on a decision made pursuant to such a supported decision-making agreement will not be subject to criminal or civil liability or a finding of professional misconduct.[37] However,  a third party will not be immune from liability for causing personal injury, acting inconsistently with the expressed wishes of a decision-maker, or failing to provide necessary information for informed consent to either decision-maker or their supporters.[38]

Supported Decision-making and New York’s Developmental-Disabilities Guardianship Statute

The goal of the legislation is to affirm that supported decision-making is a viable alternative to guardianship.[39] Most guardianship statutes require consideration of whether less restrictive alternatives to the appointment of a guardian are suitable for the individual.[40] The list of alternatives  typically include powers of attorney, health care proxies, trusts, representative and protective payees, and supplemental needs trusts.[41] New York’s developmental-disability guardianship statute does not currently require consideration of any alternatives to guardianship.  Supported decision-making and other decision-making options may not be suitable in an individual case; however, families are often not even unaware of their availability when navigating the transition of their child to adulthood.[42] These options are typically not presented during the transition process by service providers, including high school counselors, identified on the Guardianship and Fiduciary Services website[43] of the Office of Court Administration (OCA),  or listed in the guardianship application instructions.[44]  As noted earlier, families believe they have only one option – guardianship. They view it as necessary “lifeline into the legal system”[45] to address the transition of their child into adulthood.  Given the pressure on families to resort to guardianship, their lack of awareness of decision-making options, a failure to amend the developmental disabilities guardianship statute regarding alternatives does a disservice to families and individuals with developmental disabilities, and will undermine the legislation’s goal of guardianship diversion.

Resources

National Resource Center for Supported Decision-making - http://www.supporteddecisionmaking.org/

SDMNY -Supported Decision-making New York, https://sdmny.org/

Conclusion

New York’s legislative recognition of supported decision-making is significant because it acknowledges the ability of individuals with disabilities to live independent lives, and avoid guardianship. It is also consistent with New York’s policy of encouraging individuals with developmental disabilities to advocate for themselves[46] through “person centered planning,[47] and “Person First Transformation” in order to “improve opportunities for individuals with developmental disabilities in the areas of employment, integrated living, and self-direction of services.”[48] Supported decision-making as well as decision-making alternatives to guardianship should be included as alternative options in New York’s developmental disabilities guardianship statute so that families and individuals with developmental disabilities are fully informed about their choices.