New York State Senate and Assembly Hearing
Senate Committee on Health, Senate Committee on Aging, Senate Committee on Investigations and Government Operations, Assembly Committee on Health, Assembly Standing Committee on Aging, Assembly Committee on Oversight, Analysis and Investigation
August 10, 2020
Subject: Nursing Homes, Assisted Living, Home Health Care and COVID-19
Testimony: John Holt, Vera Institute of Justice, Guardianship Project
I am John Holt, the Director of Legal Services and Policy for the Vera Institute of Justice, Inc. Guardianship Project, a non-profit agency which serves as court appointed guardian pursuant to Article 81 of the mental hygiene law. In our 15 years in operation, we have served over 500 individuals in New York City who a judge has determined have some functional limitations and require the assistance of a guardian to prevent them from coming to harm.
The pandemic and actions taken to stem the spread of COVID-19 have had a profound impact on the guardianship system. Tragically, this impact includes the widespread contraction, and too often, death from the virus. Due to the underlying medical conditions that are often the clinical basis of the functional limitations that led to guardianship, it may be expected that we would see disproportionate outcomes in the rate of death among this population, however the disparities experienced between those in nursing facilities and those in their own homes should not be seen as inevitable. While we do not have any data at this point that would conclusively prove this hypothesis, our experience may unfortunately prove representative of that of many guardians across the state. Out of the 173 living clients under our care on April 1st, only 153 were still alive on May 1st, a loss of approximately 11.5% of our clients in a single month. While the 80 nursing home residents under our care made up 46% of our client base, they accounted for 95% of the deaths. These outcomes are even more concerning considering that many nursing home residents can and should be receiving long term care in their homes or less restrictive settings but are prevented from doing so by a number of factors.
While the issue of over-institutionalization is incredibly relevant in assessing the response to the current crisis and planning for future contingencies, I wish to focus on three recommendations specific to nursing facilities: permit access to facilities for participants in hearings for the appointment of a guardian, allow guardians charged with overseeing the care of residents to visit, and take action to prevent data and communication system breakdowns that impede medical decision making by guardians.
From the outset of the pandemic, there has been a class of nursing home residents who have been identified as needing a guardian, in part due to their compromised ability to understand their health status and make decisions regarding medical care. Guardianship is meant to be an expedited legal proceeding in the interest of mitigating the potential harm to those alleged to be incapacitated. Yet, despite the heightened importance of timely access to guardianship in a public health crisis we have seen a virtual freeze in new appointments for nursing home residents. The visitation restrictions in facilities have prevented court appointed counsel, evaluators, and the court personal needed to conduct a hearing from interacting with the alleged incapacitated person to the extent needed to assert their rights to meaningfully participate in the proceedings and challenge the allegations of incapacity. We need policies that allow access to alleged incapacitated persons sufficient to permit hearings to proceed so that those who require the appointment of a guardian get the protection to which they are entitled.
We have heard from many of the witnesses of the adverse effects that nursing home visitation restrictions have had on residents, but there is an even greater impact when the restricted party is a guardian charged with ensuring there is adequate and appropriate care. It is very difficult to holistically monitor the condition of our clients and to advocate for adjustments to their care, when we are unable to see them in person. Due to their functional limitations, many of our clients are unable to use technology to connect with us, and the nature of the communications with those who can, do not lend themselves towards monitoring changes in their physical and mental condition. Without being able to enter the facility we are unable to observe the environment in which care is being provided and be watchful for indicators of substandard treatment. Personal needs guardians are not simply outside decisions makers, they are an integral part of the care team for an incapacitated person and must act as their eyes and ears. We must enact policies that allow safe access to nursing facilities for guardians so that they can perform the critical functions of overseeing care for those unable to understand their medical situation and advocate on their own behalves.
Throughout the pandemic, we have been called upon to be medical decision makers, a role reliant on two critical factors to choose treatments that are in accordance with our clients’ known wishes or best interests: timely notice of changes in medical status that necessitate the guardian’s input, and access to the care team to discuss the information needed to actually make those decisions. During the pandemic we experienced breakdowns in both of these systems. Notification of the development of symptoms was often delayed, in some circumstances the facilities failed to even provide notice that a client had been hospitalized. When we identified the possible need for medical decision making, getting in touch with staff to have conversations about care was difficult and reaching the primary care physicians almost impossible. The information systems and staff in nursing facilities must be consistently able to accurately identify the guardian as surrogate decision maker, timely notify them of the need for decision making and have open and accessible lines of communication with the guardian to discuss changes in the plan of care.
In conclusion, while we understand the complexity and unprecedented nature of the present public health emergency, in the future the protection of nursing home residents must be a priority, though we need to make sure that even with the most pro-active and aggressive responses any New Yorker who is in need of a guardian has meaningful access to the court resources and processes necessary to protect them and their rights and that the thousands of New Yorkers who rely on the assistance of a guardian to oversee their care and make medical decisions, can be assured that the effectiveness of their guardian will not be curtailed precisely when they need it most.
Thank you to the honorable assembly members and senators for inviting me to testify in these vital hearings.