Guardianship for Older Adults with Disabilities: A Double-Edged Sword

February 3, 2021 / Guardianship

By Guest Writer Diana Spore, PhD, MGS

Guardianships are meant to be grounded in total trust. Guardians are fiduciaries—individuals who hold legal or ethical relationship of trust with one or more parties. Along with being trustworthy, they are meant to have high levels of honesty and confidentiality. The intent is for them to protect those who are most vulnerable from abuse, particularly those who are deemed to be “incapacitated” in the judicial system. There is a need for guardians for those who are unable to speak or make financial or medical decisions for themselves. Many guardians do their job well, watch over their wards and maintain caring, respectful relationships. These guardians attend to their responsibilities.

However, guardianship also removes basic civil rights, placing wards at higher risk of abuse. A court-appointed guardian has tremendous power in terms of making decisions about the ward’s property, land, assets, medical care, residential location, monetary transactions and personal life (e.g., who the ward may associate with, his lifestyle and where he will die). In light of this removal of basic rights, guardianship should be deemed a last resort. Other less restrictive options should be considered and set in place to see if the person can live without a guardian if she has the right supports.

Certain emergency situations may arise, placing older adults with disabilities – in effect – on the fast track to being declared in need of a guardian. These include medical emergencies in which no advance directive is in place, which may lead hospitals to file for immediate guardianship, especially when discharge planning needs to be addressed urgently. Other situations that may lead to guardianship include an older adult with a disability being notified of an impending eviction or being found to live in an abusive situation. The latter is an example of when guardianship may protect elders from abuse. The flip side is that guardianship may lead to elder abuse by the very person who has been entrusted to serve as protector.

Public Guardianship: The Unbefriended

There is a starkness—even grimness—in the use of the term “the unbefriended.” This term refers to those who require a public guardian when declared to be incapacitated. A comprehensive review of the literature on unbefriended older adults is provided by Chamberlain et al., 2018. The term arose in the literature on medical ethics. These individuals are deemed to have serious limitations in their ability to make decisions and do not have family members or friends willing or available to assist them. What characterizes this category of wards beyond impaired decision-making with regard to health care and finances? They are more likely to be:

Older
Cognitively impaired and diagnosed with dementia
Living with chronic illnesses and
Childless or have fewer children than the befriended

They are more likely NOT to have an advanced directive in place, especially in light of the fact that they have no one to take on the role of speaking for them if they cannot speak for themselves. Additionally, the unbefriended are more likely to have lower incomes and to be patients in psychiatric hospitals or residents of long-term care facilities (Chamberlain et al., 2018).

In the United States, public guardians may be lawyers, agencies or trained volunteers. Public guardianship programs in most states are managed by social service agencies, creating a potential conflict of interest as the agency plays multiple roles when offering and providing services (Chamberlain et al., 2018).

Abuse and Exploitation

While both the U.S. Government Accountability Office (2016) and, more recently, the U.S. Senate Special Committee on Aging (2018) have noted specific examples of abuse by guardians, insufficient data make it impossible to actually quantify the extent to which abuse and exploitation of older adults under guardianship exists nationwide. Media exposes and anecdotal evidence bring marked attention to the fact that abuse by guardians is a reality, and further investigation is warranted. In short, all we really know is that serious risks exist, that there are flaws or weaknesses in our guardianship system, and that abuse by guardians is not uncommon. However, we can’t identify reliable prevalence rates at the state or national levels.

Pogach and Wood (American Bar Association Commission on Law and Aging, 2019) note the following risk factors for abuse by guardians: (1) appointment of a guardian in which the former relationship was grounded in disputes; (2) the ward does not communicate needs well; (3) the ward either has no or a small estate or has a large estate; (4) the ward has a set of physical and mental health needs that the guardian is not prepared to handle; (5) the guardian has financial problems or debts; and (6) the guardian has drug or alcohol abuse problems.

Pogach and Wood (2019) provide a comprehensive checklist of signs of abuse by guardians, including failures to file accountings with the court, to file receipts, to explain many ATM transactions, and to maintain automated records. While this list focuses on finances and red flags for financial exploitation, one key emotional and psychological abuse indicator is: “isolates the person; fails to respond to requests from friends, family or service providers.”

Approaches for Protecting Those Who Are Vulnerable

The guardianship system needs significant reforms. Core approaches to implementing these changes include the following:

First, increased attention must be given to the processes of selecting, educating and monitoring of guardians. In short, guardians must be held accountable. With regard to monitoring, easy-to-use databases are needed nationwide to document financial transactions and to identify red flags for possible financial exploitation. Basic data that should be collected about guardians include the number of cases filed against them, the current status of those cases, wards’ characteristics, types of guardianships (financial, medical, etc.), and guardians’ characteristics.

Second, the least restrictive form of protecting a vulnerable individual should be identified rather than appointing a guardian without considering other options, such as supported decision-making. In this regard, it is important to develop personalized guardianship plans along with having courts order the least restrictive form of guardianship. A key resource that focuses on guardianship and supported-decision making is Guardianship and Supported Decision-Making by the American Bar Association (January 2021). This resource includes multiple reports, state statutes, publications, charts, fact sheets and videos.

Third, it is important to advocate beyond legislatures at the state level. AARP has promoted Working Interdisciplinary Networks of Guardianship Stakeholders (WINGS), based on community partnerships, aimed at identifying what is effective and ineffective in guardianship systems. WINGS aims to bring key stakeholders and communicators together to act jointly as problem-solvers and developers of action plans. The WINGS Briefing Paper about the American Bar Association Commissions’ WINGS Project and the 2019 Final WINGS Assessment Report offers more information about the promising aspects of these partnerships. In Ohio, the Ohio Interdisciplinary Guardianship Committee is a permanent subcommittee of the Ohio Supreme Court.

A 2018 report by the U.S. Senate Special Committee on Aging entitled “Ensuring Trust: Strengthening State Efforts to Overhaul the Guardianship Process and Protect Older Americans” provided a series of recommendations, especially emphasizing what is noted in the first two objectives above.

Before Guardianship Becomes Final Option, With Court Decision in Place

When possible, adults with and without current disabilities should consider the risks of abuse if guardianships become necessary, before incapacitation becomes an issue. Thinking about who should speak on your behalf if you are unable to do so is an essential part of your succession plan or end-or-life planning. One might need help in the future, despite one’s current status. Consider who might be able to serve as your healthcare power of attorney, mental health power of attorney, financial power of attorney or durable power of attorney. Who do you trust and believe you can count on to follow your wishes to the extent that is legally possible and practicable? By making decisions, when able, about who you want to have power over your life and future, you are empowered.

Guardianship is the most restrictive form of having someone speak for you, and by the time this level of incapacitation is declared, you may not have the power to express your wishes, and to therefore retain your “humanity.” Once guardianship is in place, it may be difficult to have less restrictive approaches approved by court order, even when you are recovering or have found supports to overcome deficiencies.

Promising Practices in Adult Guardianship Programs in Ohio

Although we cannot estimate the prevalence rates, we do know that guardians, guardianship agencies and guardianship programs advocate for those whom they serve when guardianships are necessary. It must be made clear that not all guardians or guardianships systems are “bad.” They do play a needed role in protecting vulnerable seniors with disabilities.

As a snapshot of what is possible and what exists in Ohio, Restorick Roberts, Nwakasi, and Ashirifi (May 2020) at Scripps Gerontology Center at Miami University profiled five Ohio counties that have demonstrated “promising practices in adult guardianship.” Butler, Cuyahoga, Franklin, Lorain, and Stark counties have developed major unique guardianship practices. Due to space limitation, only one of these promising approaches is highlighted here, drawing on information from the Restorick Roberts et al. (2020) report:

The Stark County Court Angel Program: This unique monitoring program recruits volunteers who attend training on the guardianship process and learn about mental health, socioeconomic and medical conditions, and red flags for neglect and abuse. The volunteers (“the eyes and ears of the court,” Restorick Roberts et al., 2020) review cases and schedule sessions with wards and guardians in which well-being of wards is assessed. The volunteer angel provides support to both the ward and guardian. The volunteer then files reports that are reviewed by court staff to ascertain if further follow-up is warranted.

Concluding Key Points

Guardianship has been identified as a “double-edged sword,” both intending to provide protection to wards and placing these wards at risk of exploitation and abuse from those who are entrusted to serve as their protectors. Due, in part, to serious flaws and limitations in data collection, numerous incidents of abuse by guardians have occurred, as reflected in news stories and in congressional reports noted in this blog. The number of cases nationwide is unknown; however, it is clear that it is more than a handful. The end results: financial devastation for wards as well as loss of freedom, safety, dignity and human/civil rights. Systematic efforts to identify, investigate and prosecute all forms of abuse by guardians must be improved.

In protecting wards and in strengthening the guardianship system nationwide, it is necessary to monitor guardians more closely, to hold them accountable and to be alert to red flags of potential financial exploitation, in particular. It is critical to ensure training and education for all parties involved in the guardianship system and to provide guardians with support and guidance. The least restrictive option for working with someone who is incapacitated should be considered and implemented. The door should be left wide open to monitor the process, to consider when less restrictive options are suitable due to recovery or when individuals become available who can provide support and help the ward with making decisions.

Restrictive guardianships take away rights that may not be set back in place if wards “improve” and other arrangements can be implemented. Wards can be exploited and abused. The time is now to make some critical changes:

Document the actual extent of abuse of wards by guardians,
Secure reliable data,
Monitor guardians closely,
Provide sufficient education and training,
Use holistic and individualized approaches when developing guardianship plans,
Make resources accessible, and
Work as collaborative, multi-disciplinary teams.

In addition to promising practices implemented in some Ohio counties, we see an emerging change in thinking by organizations and agencies in advocating for guardianship as a last resort. These include:

Advocacy & Protective Services Inc. (APSI), which is leading Ohio in challenging the status quo through aggressive advocacy efforts.
The Ohio Guardianship Association, which “advocates that guardianship should only be used as a last resort, and that less restrictive alternatives should be used whenever possible.” This association focuses on ethics, offering education and support.

Options beyond guardianship are also outlined in “Sometimes Less is More—Alternatives to Plenary Guardianship,” an article by Special Needs Alliance member Timothy Rigby, Esq., published on the organization’s website in 2018. As we push for changes in the guardianship system, challenging the status quo and the conventional way of thinking about guardianship, perhaps we should focus on the key words in the article title: “Sometimes less is more.”

Let’s ensure that wards are protected, and that effective approaches are in place to strengthen the guardianship system and to protect those who are deemed as incapacitated, frequently permanently.

Diana Spore is an advocate for individuals facing mental health challenges and those who are living with dementia, a writer/editor, and a mental health consumer in recovery. Spore received her Master’s degree in Gerontological Studies from Miami University (Ohio), and earned a PhD in Human Development and Family Studies, with a concentration in aging, from Penn State. She completed postdoctoral training at Brown University. Spore’s areas of expertise include mental health and aging, mental health recovery and trauma-informed care, medication optimization, long-term care, caregiving, and psychotropic drug use and inappropriate drug use among older adults. She is a former Board member of the Mental Health and Recovery Board of Ashland County (Ohio; MHRB). She was Editor-of-Chief of TAPESTRY OF OUR LIVES, an anthology of works created by individuals in recovery, a project that was done under the auspices of the MHRB. Spore served as Project Lead for a “Writing for Recovery” initiative, MHRB, and engaged in all aspects of the project, which has resulted in sustained spin-off efforts. Diana Spore has expertise in creative writing, writing for recovery, journaling for caregivers, legacy writing, and advocacy writing.