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February 24, 2023

Recap of Second Forum in Albany Law School's 2023 Disability Law Series: Civil Rights and Individuals With Developmental Disabilities

The second forum in the 2023 Disability Law Series: Civil Rights and Individuals With Developmental Disabilities, sponsored and developed by Albany Law school’s Government Law Center and Institute for Aging and Disability Law, took place on February 9. The forum, “Consent in Health Care Decisions,” was a panel composed of attorneys involved in day-to-day practice, hospital administration, teaching, and policy-making in the area of consent in health care decisions faced by people with developmental disabilities and their families. Hon. Leslie Stein, retired New York State Court of Appeals Judge and current director of the Government Law Center and Albany Law School’s outgoing president and dean Alicia Ouellette, whose pre-academia practice and writing focused on issues of rights and consent to health care, made introductory remarks.

Robert N. Swidler, vice president of legal services at St. Peter’s Health Partners, provided an outline of the several issues involved in health care decisions made by or for patients, specifically persons with mental disabilities, including: definitions of relevant terms from statutes and regulations; an overview of case law creating the right of any patient to determine to accept or decline treatment; and the exceptions to the exercise of the foregoing rights, including emergency treatment, public health considerations, and lack of capacity. Swidler further explained the two principal theories of recovery in litigation involving health care: lack of informed consent (set forth in the Public Health Law) and malpractice. He laid out the regulatory considerations and processes involved in determining decision-making capacity of a patient for whom some form of significant treatment (or alternative treatments) is proposed, especially as applied to patients with intellectual and developmental disabilities (I/DDs). He emphasized that, although statutory and regulatory standards are expressed in absolute terms, the capacity of many individuals will be a function of the complexity of required information as to treatment choices offered. Several means of expressing decisions in advance of the need for treatment were explained, including health care proxies and medical orders for life-sustaining treatment (MOLST) checklists and forms, MHL Article 81 and SCPA 17-A guardianships, as well as the surrogate decision-making frameworks contained in SCPA 1750-b and PHL Article 29-CC. Swidler also briefly explained how health care decisions can be made in or out of a hospital setting for “isolated patients,” which are persons lacking capacity for whom there exists no legal surrogate or other mechanism for decision-making.

Dr. Megan Applewhite, director of Albany Medical College’s Alden March Bioethics Institute, described the ethical framework of making health care decisions for patients lacking capacity to decide. Her remarks emphasized the moral and ethical considerations involved in testing for and determining general and situation-specific decision-making capacity. She cited several testing protocols and outlined her perception of their efficacy as applied to patients presenting with I//DDs. Dr. Applewhite also shared her perceptions of and concerns with the innate human characteristics of the testers themselves. Her central precept was that testers, lawyers, and medical professionals must not let their perception of the “quality” of a patient’s decision enter into the determination of the patient’s capacity to make that decision.

Sheila E. Shea ’86, director of the Third Judicial Department’s Mental Hygiene Legal Service, introduced and discussed the existing legal mechanisms for health care decision-making available to patients with I/DDs. She discussed the historical context of the treatment of persons with I/DDs, including the conditions underlying the Willowbrook State Developmental Center litigation (including the infection of school-aged children with hepatitis for experimental purposes). Shea acknowledged that persons with I/DDs are not excluded from appointing a health care agent and that, since 2003 (seven years before a similar statute was enacted for non-disabled persons), there has been a statutory process appended to SCPA Article 1750 that allows a list of surrogate decision-makers for patients incapacitated with I/DDs to make all necessary decisions, including life-sustaining treatment decisions. This mechanism is available to all but a theoretical handful of persons with I/DDs who have no history of services nor an available, willing relative. Shea detailed the 1750-b process, including the role of physicians in determining current capacity, diagnoses of and prognoses for patients with I/DDs, informing a range of stakeholders of decisions, and the eventual potential role of hospital ethics committees and the judiciary. She went on to explain the manner in which health care decisions can be elicited and set forth in a MOLST order (involving the completion of a MOLST I/DD checklist, which Shea co-drafted) and which form can and should follow an I/DD patient from their residence, to a hospital, and then to a nursing home or rehab facility, as applicable. Acknowledged through many of the panel’s remarks was the fact that guardianship, particularly SCPA Article 17-A guardianship, is now viewed as archaic concept and is in need of legislative attention.

Haldan Blecher, senior attorney at the NYS Office for People With Developmental Disabilities (OPWDD), discussed the concepts and structure of supported decision-making (SDM) as enacted consent.  The new SDM statute, coming into effect upon the promulgation of final implementing regulations by the OPWDD, gives formal structure to a practice that most everyone engages in—getting advice from family and friends in important situations. The statute establishes a formal model to be embodied in a supported decision-making agreement (SDMA) entered into by a person with an I/DD (the decision-maker) and a supporter with the assistance and guidance of a facilitator. Decisions to be supported include treatment plans, living arrangements, and routine arrangements involving credit, rent, and the like. There is no standard of capacity required of a decision-maker when entering into an SDMA. The statute requires third parties to recognize and honor a supported decision made according to the formal facilitated process. The statute excepts health care decisions from the foregoing process, and those decisions still require patient capacity or one of the existing health care surrogate decision-making processes. For a considerable period of time, many advocates (including self-advocates), judges, and academics have argued for SDM as a preferable alternative to guardianship, especially SCPA 17-A guardianships. Proposed regulations are anticipated in summer 2023.

The third forum in the series, “Consent of Adults in Adoption and Marriage Decisions,” will be held on Thursday, March 9, 2023, and will be moderated by Simeon Goldman, senior staff attorney at Disability Rights New York. Panelists will include: Natalie M. Chin, associate professor of law at the City University of New York and co-director of the Disability and Aging Justice Clinic; Sheila E. Shea ’86, director of the Third Judicial Department’s Mental Hygiene Legal Service; and Edward Wilcenski ’95, co-founding partner of Wilcenski & Pleat PLLC. For more information and to register for upcoming forums, click here.

If you have questions regarding this blog, please contact Paul Kietzman, of counsel, at

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