Guardianship of the Infantilized Elder: A Pipeline to the Institution Industrial Complex?

Robert Fettgather, Ph.D. is a counselor, educator, writer and activist residing in Grass Valley, California.  He holds a doctorate in psychology and master degrees in both psychology and education. Robert Fettgather has served as Special Consultant in psychometrics to the Departments of Education and Developmental Disabilities for the State of California. Robert Fettgather also holds a specialist credential in learning handicapped and community college credentials in both learning and developmental disabilities.

Note: This article was originally published online by the International Network for Critical Gerontology, July 7th, 2017

Chronologies for aging move, by clocks and calendars, from past to future across the lifespan. But not without exception. When it comes to social status for some individuals, time seems to reverse course. Teenagers demanding adult status complain relentlessly over being treated like a young child. We notice a helicoptering parent, babying a third grader with smothering overprotection. This phenomenon has been referred to, psychodynamically, as infantilization-treating an individual as if they were much younger than their chronological age. Earlier in my career, I became interested in the ways that adults with intellectual disability were infantilized, patronized, and robbed of their autonomy (Fettgather, 1987), including how they were given double-binding mixed messages to act like an adult even as they were treated like children (Fettgather, 1989). I am now turning to questions of how elders, especially those experiencing impairments associated with aging, may be diminished by practices associated with a similar social construct.

In recent years, I became acquainted with a legal device, “plenary guardianship”, wherein guardians retain all rights, powers and decisions over wards who are believed to lack capacity to care for themselves. This device seems to mirror the psychosocial experience of infantilization, but with potentially more devastating and permanent consequences. Based on a concept of parens patriae (parent of the nation) dating back centuries, the king had an explicit duty to protect those presumed to lack the capacity for managing their own lives-state sanctioned infantilization. Similarly, the contemporary “plenary guardian” is deemed ‘parent to the elder’ (or intellectually/psychosocially disabled person) who has been determined to lack adult capacity in a socio-legal construction of perpetual infancy-childhood. Plenary guardianship takes all decision-making from the ward and places it in the hands of an all powerful guardian.

In the spring of 2014, I attended the 3rd World Congress on Adult Guardianship. The conference highlighted worldwide, growing concerns and critiques of plenary guardianship. Many contemporary deconstructions of guardianship suggest that too often it is undue, overbroad and overprotective (Martinis, n.d., One Person, Many Choices; Blanck and Martinis, 2015). I argue that even benevolent guardianships may infantilize, fostering dependence and regression. And for elders of means, there is considerable anecdotal evidence of forced isolation with estate plundering by public and professional guardians. US Government Accounting Office Reports (GOA) beginning in 2004 (Government Accountability Office, 2004), and subsequent reports through 2012, show consistent patterns of financial exploitation and neglect. For example, one guardian embezzled $640,000 from the estate of an 87 year old man with Alzheimers Disease. Protective services discovered the man residing in a filthy basement and wearing just an old shirt and a diaper.

Beyond property, the very body of vulnerable elders becomes a commodity in an institution industrial complex that unites private business with government interests with an emphasis on profit making and social control (similar to the prison industrial complex). For example, Liat Ben-Moshe (Ben-Moshe, n.d., The Institution Yet to Come) emphasizes the nexus of impaired mind-bodies with an institution industrial complex dedicated to careerism: “political economists of disability argue that disability supports a whole industry of professionals that keeps the economy afloat, such as service providers, case managers, medical professionals, health care specialists etc”. With the absolute authority of a plenary guardianship, the concern is that guardians may force institutionalization into nursing home facilities where profit is the bottom line-a kind of pipeline into the institution industrial complex. Charlene Harrington, researcher at UCSF investigating care at nursing homes, summed up her findings, “Poor quality of care is endemic in many nursing homes, but we found that the most serious problems occur in the largest for-profit chains” that keep costs low to increase profits (Fernandez, 2011). A 2015 study at Hunter College also found that 12% of guardianships were initiated by nursing homes as a means to collect debt from residents (Bernstein, 2015).

With my colleague, Linda Kincaid, we have addressed elder rights to be free from plenary guardianships leading to chemical restraints (Fettgather and Kincaid, 2013) and forced isolation (Kincaid and Fettgather, 2014). Isolation is often achieved by limiting or denying visitation to hide poor living conditions or inadequate care from public scrutiny. Our current project, at the Coalition for Elder and Dependent Adult Rights, juxtaposes reports of guardianship abuse in GAO Reports and other sources with the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). The project considers current problems in guardianship and institutionalization against criteria of the UNCRPD that seek to “promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedom by all persons with disabilities and to promote respect for their inherent dignity”. We contrast guardianship abuses with UNCRPD articles for equality, privacy, justice, liberty, and freedom from exploitation and torture. In particular, we place special emphasis on Article 12, equal recognition before the law. Article 12 says that “States Parties shall recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life.” Our concern is that plenary guardianship fails the standard of equal recognition before the law, and that alternatives must be vigorously pursued.

In that regard, we align ourselves with an international group of stakeholders who believe that incapacity should not be presumed (Dinerstein, 2012). Alternatively, we are committed to the presumption of capacity and to advancing supported decision-making as an alternative to plenary guardianship for elders and people with intellectual and psychosocial disabilities. In this model, decisions, supported by one or more persons, are made by the individual who has ultimate authority over his/her life. Personhood is honored, with no one acting as surrogate parent. We believe that this approach, with appropriate safeguards, oversight and subject to regular review, will disrupt the pipeline from guardianship to institution industrial complex. It will help reset clocks and calendars for heretofore infantilized adults and restore dignity, autonomy and adult status to the decision-making process.

References

Ben-Moshe, Liat. (n.d.) “The institution yet to come”: analyzing incarceration through a disability lens. Academia.edu, 1-16.

Bernstein, Nina (2015, January 25) To Collect Debt Nursing Homes Are Seizing Control Over Patients. Retrieved from https://www.nytimes.com/2015/01/26

Blanck, P. and Martinis, J. (2015). ‘‘The Right to Make Choices’’: The National Resource Center for Supported Decision-Making. INCLUSION, Vol. 3, No. 1, 24–33.

Dinerstein, Robert D.(2012) “Implementing Legal Capacity Under Article 12 of the UN Convention on the Rights of Persons with Disabilities: The Difficult Road From Guardianship to Supported Decision-Making.” Human Rights Brief 19, No. 2, 8-12.

Fernandez, Elizabeth. (2011) Low Staffing and Poor Quality of Care at Nation’s For-Profit Nursing Homes. UCSF News Center. Retrieved from https://www.ucsf.edu/news/2011/11/11037

Fettgather, Robert (1989).‘Be an Adult’: A Hidden Curriculum in Life Skills Instruction for Retarded Students? Lifelong Learning: An Omnibus of Practice and Research, Vol 12, No.5, 4-5,10.

Fettgather, Robert (1987) The Relationship of Teacher Adult Ego State to Interactions with Retarded Students. Transactional Analysis Journal. Vol 17, No. 2, 35-37.

Fettgather, R. and Kincaid, L. (2013). Chemical Restraint in Long-term Care. Southern California Public Health Conference. Los Angeles, California

Government Accountability Office. (2004). Collaboration Needed to Protect Incapacitated Elderly People (GAO Publication No. 04-655:). Published: Jul 13, 2004. Publicly Released: Jul 22, 2004.Washington, D.C.: U.S. Government Printing Office

Kincaid, L. and Fettgather, R. (2014) False Imprisonment and Isolation in Long-term Care. American Society on Aging Conference, San Diego, California

Martinis, J. G. (n.d.). One person, many choices: Using special education transition services to increase self-directionand decision-making and decrease overbroad or undue guardianship. Quality Trust for Individuals With Disabilities,1-29.

United Nations Convention on the Rights of Persons with Disabilities (n.d.)United Nations, 1-22. Retrieved from

 

To Your Health!

The Institute for Personality and Ability Testing has certified Robert Fettgather as a Stress Management Trainer, and Medical Hypnosis Seminars of the Los Gatos Institute has certified him in Clinical Hypnotherapy. At Santa Clara University, Graduate Department of Education and Counseling Psychology, Robert Fettgather's studies included Health Education and Behavioral Medicine. Moreover, Robert Fettgather has completed Hospice Training with Hospice of the Valley.

Health psychology is the field of study devoted to understanding the relationship between physical activities, psychological traits, and social relationships and overall health and rates of illness.

Health psychology promotes coping strategies which are actions that people take to master, tolerate, reduce, or minimize the effects of stressors and include both behavioral and psychological strategies. Problem-focused coping describes the individuals efforts to reduce or eliminate the source of stress or reduce its impact by taking some action. Emotion-focused coping necessitates changing the way you feel or react toward a stressor. a well-known example of emotion-focused coping employs the use of psychological defense mechanisms studied earlier in the course. Examples are denial, repression, rationalization, and projection, among others.

According to author Licht "There are many ways to lower the impact of stressors. Exercise, meditation, progressive muscle relaxation, biofeedback, and social support all have positive physical and psychological effects. Caring for and giving to others are also effective ways to reduce the impact of stress."  Spirituality and religion have also been found to affect an individual’s level of stress as well as the strategies used to cope with that stress. According to a Pew Center Survey nearly 80 percent of Americans say they practice some type of religion, while approximately 20 percent, mostly younger people, say they do not.

To summarize: A few ways that individuals can promote wellness in their own lives include movement and exercise, becoming socially connected with others, getting adequate sleep, eating healthy foods, scheduling recreation time and having fun, effective time management, and just breathing deeply.

Reflection For Mid-Life

Robert Fettgather has practiced meditation over four decades. He studied religion and spirituality at the University of California, Santa Cruz, and is co-founder of the Tashi Lhunpo Sangha, Palo Alto California. Robert Fettgather is a member of the American Federation of Teachers and Psychologists for Social Responsibility and the International Society for Ethical Psychology and Psychiatry. Robert Fettgather has taught Psychology for more than forty years. He has received the Santa Clara University’s Certificate of Recognition for Published Work.

For Erik Erikson, the primary task of middle adulthood is the development of generativity sometimes through  mentoring younger individuals- in Erikson's words, "guiding the next generation". Certainly this embodies parenting, and ideally a career with some significance toward making the world a better place for the next generation.  Besides a vocation, generativity could be expressed avocationally in activities that improve the human condition. Many middle aged and older adults become involved in social causes and solutions  that address problems from violence, to poverty, to the environment and climate crisis. In fact, the application of Erikson's concept of generativity to environmental and climate concerns has been called environmental generativity.

Indeed, the catastrophic and imminent threat of the climate crisis, from years of taking from the earth without thought for future generations,  is the antithesis of Eriksonian generativity. In Erikson's words, those who fail to develop generativity often suffer from a “pervading sense of stagnation and personal impoverishment [and indulge themselves] as if they were their own one and only child.”

Some social scientists believe that there is little empirical support for the popular notion of a “midlife” crisis, as described by Levinson. But from a theoretical perspective, I argue the contrary from an Eriksonian view. Specifically that foreclosures in relationship and work/career in adolescence/early adulthood may lead to a potential crisis later on. Some people find that a marriage or career selected prematurely is simply not an enlightened and lifelong fit. 

This is not to persuade that having an affair or buying a Ferrari is an effective resolution. Instead, like all crises,  it is an opportunity for reflection and, perhaps, a more favorable set of life decisions. 

Your Task

Robert Fettgather holds a Ph.D in Psychology and Masters degrees in both Psychology and Special Education and received the Distinguished Alumnus Award from West Valley College. Robert Fettgather has served as Special Consultant in psychometrics to the Departments of Education and Developmental Disabilities for the State of California.

Your task is not to seek for love,

but merely to seek and find all the barriers within yourself

that you have built against it.” ... Rumi

Love can be tricky. Most of us desire love but sometimes struggle with giving it or accepting it. The words from Rumi, a 13th-century Persian poet, suggest that love and human affiliation may be our natural inclination-unless we somehow resist and even block it.

Here we will emphasize intimacy and other developmental tasks of adulthood. 

Young adulthood can be stressful as you know from experience!  Part of the stress comes from the fact that so many transitions occur in such a relatively short time span. Still, each transition brings with it new opportunities for personal growth.

Freud, the story goes, was once asked what a normal adult should expect to do well. The interviewer perhaps expecting a profound and complicated response might have been surprised to hear  Freud answer simply, "lieben und arbiten" (to love and to work). Love and work are the primary themes of adulthood- Erikson used the terms intimacy and generativity to describe these two needs.

Let's further unpack issues related to emotional connection. Intimacy is the capacity to engage in a supportive, affectionate relationship without losing one's own sense of self. Previous Eriksonian stages come into play.  A poor sense of identity is only one barrier to intimacy and as you might imagine, so is the capacity to form trust. Gender differences are also important to note. To many women, intimacy is partly a function of self-disclosure. Most men do not see self-disclosure as essential to intimacy. Consequently, many men voice satisfaction with relationships that their female partners may view as inadequate.