Article 17-A of the Surrogate’s Court Procedure Act was enacted in 1969 to allow parents and family members to continue to have legal responsibility for their loved ones with intellectual and developmental disabilities after the age of majority. This continued legal authority recognizes the lifelong nature of intellectual and developmental disabilities, and is essential for families to help their loved ones make critical decisions into adulthood, including decisions on life-sustaining treatment.
However, there are longstanding constitutional concerns with Article 17-A that we attempted to address last session with legislation we initiated (S.5842 by Hannon/A.5840 by Lavine) to eliminate the need for the federal lawsuit brought by Disability Rights New York (DRNY) to repeal Article 17-A. Although DRNY’s lawsuit was dismissed from federal court because it was deemed a state issue, it is likely they will pursue the lawsuit in state court. If Article 17-A were to be repealed, it would create chaos for tens of thousands of people with intellectual and developmental disabilities and their families throughout New York State, and would imperil critical programming decisions, financial decisions, and health care decisions.
Should the Health Care Decisions Act be repealed as well, which is embedded in Article 17-A, it could force families to revisit a period in which people with intellectual and developmental disabilities cannot make end-of-life decisions for themselves, and could be subject to needlessly painful, extreme, and futile life-sustaining treatment which prolongs their agony and the agony of their family members.
We support revising Article 17-A to remedy constitutional concerns as proposed in S.5842 by Hannon/A. 5840 by Lavine. This bill strikes a balance between respecting the rights of the individual and giving parents and family members the legal authority to care for their loved one in a manner appropriate to the unique needs of the individual. Countless family members rely on Article 17-A to provide the reassurance that they can always be there for a loved one who has a lifelong disability. For all of them, the threat that guardianship could be taken away is a matter of profound concern.
We oppose any legislation, like A.8171-A proposed last legislative session by Lavine and Weinstein, that would create an onerous process and burden families with additional legal proceedings and expenses. Since many families do not have the means to pay an attorney for multiple court appearances, a bill like A.8171-A would likely result in many families not petitioning for guardianship, thereby leaving people with intellectual and developmental disabilities without the support of their families to make important decisions related to their health, finances, and daily supports. This would result in relegating important decisions for people with limited decision-making capacity to strangers serving on the Justice Center’s Surrogate Decision-Making Committee.