Supported Decision Making

SUMMARY

The Mental Health Law Committee and Disability Law Committee issued a report in support of amending the state Mental Hygiene Law in relation to supported decision-making by people with intellectual, developmental, cognitive and psycho­social disabilities. Supported decision-making (SDM) is an emerging practice by which persons with intellectual, developmental, cognitive and psychosocial disabilities can make their own decisions with the support of trusted persons in their lives. A growing number of U.S. states and the District of Columbia have adopted legislation to legally recognize decisions made pursuant to supported decision-making agreements (SDMAs). SDMA statutes have a number of purposes, including encouraging and incentivizing the use of SDM and SDMAs, empowering people with disabilities to become more self-determined and autonomous, and ending unwarranted discrimination against persons with disabilities whose decisions are often questioned or disregarded because third parties believe that they “lack capacity.” The City Bar supports the proposal and recommends that it include a requirement that relevant state entities — including schools and appropriate clerks’ offices in Surrogates Courts and Supreme Court, Civil Term — provide accessible information on SDM and SDMAs as an alternative to guardianship.

Originally Issued July 2021; Reissued May 2022

BILL INFORMATION

A.8586-B (AM Simon) / S.7107-B (Sen. Mannion) – relates to supported decision-making by people with intellectual, developmental, cognitive and psychosocial disabilities (NYS 2021-22)

OUTCOME

Signed by the Governor, Chp. 481 – July 26, 2022

REPORT 

REPORT ON LEGISLATION BY THE
MENTAL HEALTH LAW COMMITTEE AND
THE DISABILITY LAW COMMITTEE

A.8586-B (M. of A. Simon)
S.7107-B (Sen. Mannion)

AN ACT to amend the mental hygiene law, in relation to supported decision-making by people with intellectual, developmental, cognitive and psycho­social disabilities. (Office for People with Developmental Disabilities (Internal # 3 – 2021))(Departmental Bill # 99)

THIS BILL IS APPROVED WITH MODIFICATION 

Supported decision-making (SDM) is an emerging practice by which persons with intellectual, developmental, cognitive and psychosocial disabilities can make their own decisions with the support of trusted persons in their lives. SDM can take many forms, from entirely informal to a more formal process resulting in a signed supported decision-making agreement (SDMA) between the person with a disability, often referred to as the “Decision-Maker,” and their supporters. SDM is now widely recognized as a constitutionally required “less restrictive alternative to guardianship;[1] the Uniform Law Commission has explicitly included SDM as such in its recently revised Uniform Guardianship, Conservatorship and Other Protective Proceedings Act,[2] and several states have followed suit.[3]

At the same time, a growing number of U.S. states—ten as of this writing—and the District of Columbia, have adopted legislation to legally recognize decisions made pursuant to supported decision-making agreements (SDMAs).[4] SDMA statutes have a number of purposes, including encouraging and incentivizing the use of SDM and SDMAs, empowering people with disabilities to become more self-determined and autonomous, and ending unwarranted discrimination against persons with disabilities whose decisions are often questioned or disregarded because third parties believe that they “lack capacity.” SDMA statutes, like the instant bill, draw on the non-discrimination principles of the Americans with Disabilities Act to require equal treatment of persons with disabilities who make decisions pursuant to a legislatively recognized SDMA by requiring third parties to accept those decisions and, in return, conferring immunity for their good faith acceptance.[5] As the Legal Director for the Autism Self-Advocacy Network has written, “It is critical that states adopt legislation through which people with significant decision-making support needs can make legally enforceable decisions with the assistance of a chosen support network.”[6]

The New York City Bar Association (“City Bar”) was founded in 1870 and is a private, non-profit organization of approximately 24,000 attorneys, judges and law professors.  The City Bar has long supported the vigorous and fair enforcement of civil rights laws.  In January 2016, the City Bar’s Mental Health Law Committee and Disability Law Committee issued a report, Revisiting S.C.P.A. 17-A: Guardianship for People with Intellectual Disabilities, which addressed how, if at all, the state should provide substituted decision-making for this vulnerable population, and specifically noted the emergence of SDM as “a new model of autonomy and self-determination.”[7]  The Mental Health Law Committee and Disability Law Committee respectfully urge the Legislature to consider the adoption of A.8586-B / S.7107-B (“the bill”), with the modification proposed, in order to ensure that the rights of people with intellectual, developmental, cognitive and psychosocial disabilities are properly protected.

I. The Bill is the Consequence of Significant Involvement and Investment by the State

New York has played a significant and thoughtful role in the formulation and development of SDM and SMDAs in theory and in practice.  In 2012, the American Bar Association Commissions on Law and Aging and Disability Rights convened the first national, interdisciplinary roundtable to explore SDM in New York City.[8]  The convening received funding from the New York Community Trust and support from the federal government’s Administration for Community Living.[9]  Three years later, as efforts to enact SDMA legislation grew around the country, the New York State Developmental Disability Planning Council (DDPC), awarded a $1.5 million, five-year grant to Supported Decision-Making New York (SDMNY) to educate stakeholders about SDM, to develop and pilot a model utilizing SDM to divert persons at risk of guardianship or restore rights to persons currently under guardianship, and to develop an evidentiary base for prospective SDMA legislation in New York.[10] Over the last five years, SDMNY has enrolled more than 140 Decision-Makers, developed a three-phase model that facilitates Decision-Makers and their supporters in making an agreement reflecting the process by which the Decision-Maker will make decisions and the supporters will provide support going forward.[11]

Unlike the other jurisdictions that have enacted SDMA statutes with no empirical, “on the ground” evidence, New York’s prescient decision to first thoroughly explore how SDM actually works for people with intellectual and developmental disability (I/DD) positions it as a leader in fostering the rights of people with intellectual, cognitive and psychosocial disabilities through an authentic practice of SDM.

II. By Recognizing SDM as an Alternative to Guardianship, the Bill Will Clarify Existing Law and Provide Guidance to Courts, Litigants and Counsel

Although New York has recognized the constitutional imperative of “least restrictive alternative” in case law, [12] and provided that other decisional supports must be considered before guardianship is imposed pursuant to Article 81 of the Mental Health Law (MHL),[13] SDM is nowhere specifically named.[14] Article 17-A of the Surrogate’s Court Procedure Act (SCPA) lacks any reference to consideration of alternatives whatsoever. By naming the process of SDM as “a way by which a decision-maker utilizes support from trusted persons in their life, in order to make their own decisions about their life,”[15] stating explicitly that SDM can be “a less restrictive alternative to guardianship,”[16] and recognizing that SDM may take a variety of forms,[17] including informal arrangements, all of which may be considered by courts as “less restrictive alternatives,”[18] the bill fills the existing lacuna, providing clear guidance to courts and litigants.

III. By recognizing SDM, and Prescribing a More Formalized Process for Making SDMAs, the Bill Will Provide Families an Alternative to Guardianship While Leaving Existing Guardianship Statutes in Place and Available When Appropriate

The bill does nothing to change existing guardianship law which has, in any event, proven relatively impervious to alteration.[19]  No one is, or can be, required to use SDM or enter into an SDMA.[20] Nor does the use of SDM or the existence of an SDMA necessarily result in denial of a proposed guardianship, or termination of an existing guardianship; a factual inquiry into the need for the guardianship, and whether SDM or the SDMA actually constitutes a less restrictive alternative, is always required. SDM or an SDMA does not preclude parents or other potential petitioners from seeking—and obtaining—guardianship if the process is not effectively meeting the needs that guardianship is statutorily prescribed to fill. Studies consistently demonstrate that many parents who want to continue promoting the autonomy and self-determination of their adult children with I/DD believe they have no alternative other than to seek guardianship and are unaware of existing alternatives.[21] The bill provides an alternative that families are free to try and which may prove a beneficial and less restrictive alternative, preserving the civil and legal rights of persons with I/DD.

At the same time, the bill will incentivize the use of SDM by families seeking to promote self-determination of their adult children with I/DD. One outcome from the DDPC-supported pilot project is particularly salient. Many parents and their adult children with I/DD are anxious to try SDM, but fear that, in the absence of legal recognition, they will inevitably find themselves in a situation where a third party (generally perceived to be a health-care provider) refuses to provide services to the Decision-Maker because of her/his perceived lack of capacity, insisting instead on a guardianship order.  Many other families face pressure—whether intentional or through the well-intentioned recommendations of professionals—to seek guardianship.[22]

Those parents, facing what they understand to be the likely “inevitability” of guardianship, may say that the time and work that goes into creating an SDMA is simply not worth it—unless and until there is legal recognition of decisions made pursuant to the SDMA. Parents who have been surveyed are virtually unanimous in supporting legislation that “solves” this problem by providing for legislative recognition, and report that it would positively impact their decision to try SDM.[23] That is precisely what the bill will provide.

IV. The Bill Will Prevent Discrimination Against People with Intellectual and Developmental, Cognitive and Psychosocial Disabilities Based on Stigma, Prejudice or Fear of Liability

For many reasons, third parties, both private and public, question the ability of persons with disabilities to make decisions and often refuse to accept their decisions. [24] In practice, this means individuals with disabilities are frequently deprived of the right to legal capacity.[25] Although existing law presumes that all adults have legal capacity,[26] a diagnosis of intellectual, developmental, cognitive, or psychosocial disability, or belief that a person has such disability, often results in discriminatory treatment, including refusal to recognize their decisions.[27] The bill, similar to existing SDMA legislation in other jurisdictions, avoids such discrimination by removing the ability of third parties to make their own “determinations” of a person’s legal capacity based on their disability. Instead, the bill provides that a decision made pursuant to a recognized SDMA is presumptively made with legal capacity.[28] In this respect, the bill reflects the principles and requirements of the Americans with Disabilities Act by recognizing SDM, through a prescribed process reflected in an SDMA, as an accommodation that enables people with disabilities equal access to contractual relationships.[29]

V. The Bill Provides Protection Against Possible Abuse or Exploitation of Decision-Makers

Families often are concerned about possible exploitation of their vulnerable adult children with I/DD and seek guardianship as “protection,” relying on supposed court oversight. In fact, Article 17-A of the SCPA has no provision for reporting once a guardian has been appointed, or for any periodic review.[30]  In contrast, the bill provides significant protection by essentially creating “on-the-spot,” “point-of-transaction” monitoring, by permitting a third party to refuse to accept a decision if there is substantial cause to believe it is the product of abuse, coercion, undue influence or financial exploitation by a supporter,[31] and to report the alleged abuse, coercion, undue influence or exploitation to the appropriate protective agency, in real time, without fear of any penalty.[32]

In addition, existing SDMA statutes have been subject to criticism that, by creating a “legal status” for supporters unrelated to any court proceeding or oversight, people with disabilities entering into SDMAs easily could be exploited through a kind of “guardianship on the cheap.” If a supporter had the right to “communicate” and/or enforce (or “implement”) the alleged decision of a person with a disability, they would essentially have all the powers of a guardian, but with none of the protections of court-imposed guardianship.[33] The bill protects against this in several ways. First, it explicitly states that a supporter may not make decisions for the Decision-Maker,[34] be considered a substitute decision-maker, or legally bind the Decision-Maker to any legal agreement.[35] Second, where other SDMA laws have accorded legislative recognition to decisions made pursuant to SDMAs that are simply signed forms, with no requirement of any education or facilitation process to ensure that both the Decision-Maker and supporters understand and have committed to a process of trust and respectful support, the Bill draws on the experience of the DDPC-funded project and requires completion of a meaningful facilitation process for Decision-Makers and their supporters for SDMAs in order to require recognition.[36]  Finally, as noted below, the bill also draws on empirical evidence—and the lack thereof—to initially limit recognition to SDMAs made by people with I/DD for whom there is consensus on what constitutes appropriate decision-making support.

VI.  The Bill Encourages SDM and the Use of SDMAs for Everyone While Initially Limiting Legislative Recognition to People with I/DD for Whom Effective and Appropriate Supports Have Been Empirically Demonstrated

The bill provides that an SDMA can be made by any adult, thus “normalizing”[37]  the process, and recognizing that, in making decisions, “everyone uses supports, as do people with disabilities, who may just need more or different kinds of supports.”[38] How an SDMA is made, what it may and may not contain, and provisions ensuring that the making of an SDMA can neither be used against the person, nor required of them,[39] apply to everyone. To confer legislative recognition, however, there should be some significant level of confidence that the person who has executed the SDMA has appropriate and adequate supports to make decisions. To date, virtually all of the pilot projects and evaluations around the world have involved people with I/DD and have resulted in a general consensus on the use of a process of facilitation for Decision-Makers and their supporters;[40] the DDPC-funded pilot in New York has confirmed that facilitated SDM provides the necessary and appropriate support for legislative recognition of decisions made by persons with I/DD pursuant to an SDMA. There is no corresponding evidentiary base, or the existence of any pilot projects for persons with other disabilities, and no clear understanding of what kinds of support would be necessary for them to achieve or be afforded legal capacity.[41] The bill acknowledges this gap while calling on government and civil society to “develop appropriate and effective means of support for older persons with cognitive decline, persons with traumatic brain injuries, and persons with psychosocial disabilities, so that full legislative recognition can also be accorded to the decisions made with supported decision-making agreements by persons with such conditions.”[42]

VII. The Bill Should Include a Requirement that Relevant State Entities Provide Accessible Information on SDM and SDMAs as an Alternative to Guardianship

Few, if any, of the many benefits of this bill will actually occur unless stakeholders know about SDM and SDMAs. Research consistently shows that parents of transition-age adults with I/DD are routinely and repeatedly informed about, and encouraged to pursue, guardianship when their children turn 18.[43] This leads to what the National Council on Disability calls the “school to guardianship pipeline.”[44] Similarly, many parents report that they had no idea of available alternatives, and had never heard of SDM.[45] Parents and self-advocates believe that information about SDM should be more readily available, and national organizations have likewise called for information on SDM to be made available in the educational and court systems[46] as well as for professionals and others.[47] This is also a “learning” and recommendation of the DDPC-funded project.[48]

To ensure that persons with developmental, intellectual, cognitive and psychosocial disabilities, those who might seek guardianship, and current guardians have access to information about SDM, potentially preventing unnecessary guardianships and protecting the civil and legal rights of persons with disabilities, the bill should include a provision directing the Department of Education to require that schools provide information on SDM and SDMAs as an alternative to guardianship to students and parents during transition planning.[49] Additionally, the bill should require the Office of Court Administration to provide similar information in the appropriate clerks’ offices in Surrogates Courts and Supreme Court, Civil Term, and that all such information should be made available in accessible form.

Mental Health Law Committee
Karen Simmons, Chair

Disability Law Committee
Katherine R. Carroll, Chair

Reissued May 2022