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May 2, 2023

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

The fifth and final forum in the 2023 Disability Law Series: Civil Rights and People With Developmental Disabilities, sponsored and developed by Albany Law School’s Government Law Center and Institute for Aging and Disability Law, took place on April 13. The forum, “Potential Statutory Reforms to Protect the Civil Rights of People With Developmental Disabilities” was a panel comprised of Rose Mary Bailly, overseer of the Institute for Aging and Disabilities Law of the Albany Law School Government Law Center and adjunct professor of law at Albany Law School; Paul Kietzman ’72, of counsel at Barclay Damon LLP and chair of the Elder and Disability Law Committee of the Albany Law School Government Law Center; Sheila Shea ’86, director of the Mental Hygiene Legal Service for the Third Judicial Department; and Robert N. Swidler, vice president of legal services at St. Peter’s Health Partners. Hon. Leslie Stein, Albany Law School Government Law Center director and retired Court of Appeals justice, welcomed the panelists and participants, and Jennifer J. Monthie ’03, legal director of Disability Rights New York, introduced and moderated the discussion. 

Bailly spoke first on the long-standing issue of reforms needed to resolve the differences in due process protections and oversight of guardians between New York State Mental Health Law (MHL) Article 81 and Surrogate’s Court Procedure Act (SCPA) Article 17-A. Historically, Article 17-A was the product of parent organizations like the Arc of New York (formerly NYSARC, Inc.) and was an inexpensive and effective way to permit advocacy organizations to successfully create and access community-based services for children aging out of public-education supports. However, for 30-plus years, Article 17-A has been known for inadequate due-process protections, a diagnosis-based standard, and a comparative lack of meaningful court follow-up and oversight—especially when compared to MHL Article 81. If there remains any need for two NYS guardianship statutes, Article 17-A is in need of legislative attention.

Swidler presented the arguments for folding SCPA Section 1750-b, which outlines health care decisions for persons who are intellectually disabled, into the Family Health Care Decisions Act (FHCDA) (Public Health Law Article 29-CC). Section 1750-b was enacted in 2002, driven by a particularly troubling prolongation of the life of a person with a developmental disability in the Upstate Medical Center, and empowered several classes of persons to make end-of-life decisions for persons with developmental disabilities. Not until 2010 was the FHCDA enacted, covering end-of-life decision-making for non-developmentally-disabled persons. The last sections of the FHCDA directed the governor’s task force to draft and propose legislation to bring people receiving supports for chronic mental illness and people with developmental disabilities under the protection of the FHCDA. There exist numerous differences between the standards and processes involved in these two statutes, which place a significant burden on treating hospitals and physicians. The panel discussed aspects of Section 1750-b that should be folded into the FHCDA by the legislature.

Paul Kietzman, retired of counsel at Barclay Damon LLP and former general counsel to the New York State Office for People With Developmental Disabilities (OPWDD) and NYSARC, Inc., presented the arguments for an “act now” option for health care proxies (HCPs) under the New York Public Health Law (PHL) Article 28-C. In New York State, a health care proxy is a “springing power” according to which the agent can only make decisions when the patient or principal is determined to lack capacity. Capacity and competence have different definitions, and the level of competence required to execute a HCP is quite low. A person (with or without a developmental disability) on any given day could have the competence to execute a HCP while at the same time lacking the capacity to make a health care decision confronting them. Because there is only a single opportunity for a patient or principal to be consulted following a determination of incapacity, the existing law may be unfair to people with developmental disabilities. The “act now” option for HCPs—which exists in several other states, including California—allows the agent and principal to hear everything the treating clinician discloses and make decisions together. As outlined in the current statute, a principal’s decision takes precedence.

Finally, Shea argued for portions of the Domestic Relations Law relating to adult adoptions to be reexamined. She briefly summarized the seminal 2020 case, Matter of Marian T., through the Court of Appeals. A central issue in the case was the need for “consent” from an adult adoptee in order to be adopted into a family. There was no dispute that Marian T. lacked the capacity to consent. As a result, the lower court treated Marian T. as if she were an infant and appointed a guardian ad litem to investigate the circumstances and provide consent on her behalf. The petitioner adoptive parents in this case had been paid family care providers for Marian T. and were subject to the periodic reporting and oversight of the NYS OPWDD. As a precedent, the decision promotes an assumption that an adult person with a developmental disability would prefer a “family” relationship to that of a caretaker. Such an outcome also has the effect of withdrawing the state’s parens patriae protections from the adoptee.

The panel proceeded to share their perspectives on a number of questions posed first by Monthie and then by participants. There was no serious disagreements over the several suggested legislative reforms proposed.

For more information about the forum series and to view recordings, click here.

This blog was authored by Paul Kietzman, retired of counsel at Barclay Damon. If you have any questions regarding the content of this blog, please contact Melissa Zambri or Margaret Surowka, Health & Human Services Providers Team co-leaders, at and  

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