Elder self-neglect and adult protective services: Ohio needs to do more.

• Author: White, William

1. INTRODUCTION II. BACKGROUND A. Elderly Self-Neglect: What is Really the Problem? B. Elder-Self Neglect Causes C. Adult Protective Services III. THE NEED FOR REMOVING APS JURISDICTIONAL RESTRICTIONS A. The Ohio Department of Health B. Long Term Care Ombudsman Program C. Removing the APS Jurisdictional Restriction 1. Minnesota Law 2. Mississippi Law 3. Proposed Changes to Ohio APS Law Regarding Jurisdictional Matters IV. DEVELOPING A DIFFERNTIAL RESPONSE FOR ADULT PROTECTIVE SERVICES A Child Protective Services and Differential Response B. Ohio's Foray into Differential Response C. Applying Differential Response to Adult Protective Services V. FUNDING VI. CONCLUSION I. INTRODUCTION

   Carlene was found dead at age seventy-nine. (1) She lived in a low income, senior apartment complex in Toledo, Ohio. While many lived around her, no one was required to help Carlene. She had no working light bulbs in her apartment, her toilet seat was broken, and she had no sheets on her bed. Trash was all over the floor and some of it was stained with blood. Carlene was 5-foot-9-inches tall, but her weight had plummeted to eighty-five pounds. She looked ill when neighbors saw her in the laundry room. Her apartment did have a pull cord for emergencies, but she never used it. In fact, Carlene never asked for help, and some think she did not want it. Neighbors tried to alert the front desk, but all the staff could do was call and ask Carlene if she was all right, and Carlene replied that she was fine. Newspapers were also piling up in front of Carlene's door. The front desk called a second time; Carlene did not reply. After a third call went unanswered, apartment staff forced themselves into Carlene's apartment and found out they were too late.

   Carlene was unfortunately a victim of self-neglect. The National Center on Elder Abuse (NCEA) has defined self-neglect as "behavior of an elderly person that threatens his/her own health or safety" and is manifested by "refusal or failure to provide himself/herself with adequate food, water, clothing, shelter, personal hygiene, medication (when indicated), and safety precautions." (2) Self-neglect has become the most common form of domestic elder abuse in the United States. (3) While other forms of abuse may receive more publicity, self-neglect is the most reported and substantiated form of elder abuse. (4) Ohio exceeds the national trend in regards to self-neglect reports; self-neglect constituted over half of the reports to Adult Protective Services (APS) regarding elders. (5) In fact, self-neglect concerns exceeded the combined reports of abuse, neglect, or exploitation in Ohio. (6)

   The elder self-neglect problem is exacerbated by the rapid aging of the U.S. population. (7) Currently, 40.4 million people are sixty-five years or older (one in every eight Americans); (8) this is a 15.3% increase since 2000. (9) Aging of the "Baby Boomer" generation is accelerating this growth. (10) By 2030, it is projected that one in five Americans will be sixty-five years or older. (11)

   Many elderly individuals receive care in nursing facilities, which have been commonly called nursing homes in the past. (12) According to data collected by the Centers for Medicare and Medicaid, there are approximately 1.4 million nursing facility clients. (13) Ohio ranks fifth in the nation with 79,000 nursing facility clients. (14) At age eighty-five years old or older, twenty-eight percent of Ohioans have had at least one nursing facility stay. (15) Individuals who are admitted to a nursing facility for short-term rehabilitation, however, average a stay of only twenty-seven days. (16)

   Nationally, over the last several decades, the discharge rate from nursing facilities increased from forty-six to ninety-two discharges per hundred beds in 1999. (17) Medicare provides for short-term rehabilitative services in a nursing facility for up to 100 days in a benefit period. (18) The 100 days are not always used consecutively, as the length of stay is based on what is deemed medically necessary. (19) In 2003, of the 169,000 admissions into Ohio nursing facilities, 116,000 were classified as Medicare stays. (20) This figure represents a thirty-seven percent increase from the number of Medicare admissions in 1992. (21)

   Despite the high volume of elderly individuals coming in and out of nursing homes, Ohio statutes specifically exclude APS from receiving referrals regarding individuals who are patients in a nursing facility. (22) Ohio APS is mandated to investigate reports of elderly abuse, neglect (both by caregiver and self-inflicted), and exploitation, but cannot do so if the individual is in a nursing facility, even on a short-term basis. (23)

   Ohio APS statutes are antiquated, do not reflect the increasingly complex needs of self-neglecting elderly, and need to be changed to decrease the likelihood of significant self-harm or even death, as represented in the story of Carlene. Section II of this paper provides background information on elder self-neglect and APS. Section III discusses why Ohio needs to mandate that APS jurisdiction includes nursing facilities and how the law could be effectively changed. Section IV discusses how APS interventions need to evolve to meet the diverse needs of the growing elderly population; a singular investigative response no longer fits for every client. Instead, development of a differential or alternative response system will be proposed. Adopted from the field of child protective services, differential response emphasizes a more collaborative approach with the elderly person towards the goal of maintaining community living. Lastly, Section V discusses the financial hurdles that APS will face in making effective changes and possible funding avenues.

2. BACKGROUND

   The slow realization that elderly self-neglect is a problem that needs the nation's attention is partly a product of our strong belief in self-determination, especially for adults. A legal scholar noted that "[i]n America, citizens have the inalienable right to make really bad decisions ... Therefore, it is critical that infringement on an individual's liberty ... often triggered by self-neglect, does not occur unnecessarily, prematurely, or inappropriately." (24) The tension between an adult person's right to make his own decisions and the responsibility of society to protect the individual from harm has made defining, researching, and addressing self-neglect an arduous and often debated process.

   How self-neglect is defined can be a contextual question. (25) An elderly woman who kept a messy home all of her life may not be viewed to be self-neglecting when her house becomes messier. (26) But, if the same woman instead maintained a pristine home but fails to do so in her elder years, then is she self-neglecting when the house becomes cramped with belongings and substantially cluttered? (27) And at what point do her living conditions or her own physical well-being become the concern of society? (28) In defining and discussing self-neglect in this Note, the right to self- determination and liberties for elderly persons are not questioned. Society should not take action in regards to an elderly person because "he or she has offended society's sensibilities or become an irritant, nuisance, or inconvenience to family, friends, or community." (29) Instead, self-neglect should be addressed when the act of not assisting or protecting an elderly individual would result in that person being unable to live in the community. (30) The goal of APS, consequently, would not be the infringement on freedom per se, but the promotion of continued livelihood at home. The following section reviews various attempts to define self-neglect and observed manifestations of the phenomena.

   1. Elderly Self-Neglect: What is Really the Problem?

      While approximately eleven states (31) and the federal government (32) have statutorily defined self-neglect, the concept remains elusive. (33) Lack of a standardized definition has hampered research into the issue. (34) There is no standardized and universally accepted definition of the concept in the professional literature. (35) A review of related empirical research studies and scholarly literature garnered approximately thirteen different definitions of elderly self-neglect. (36) While the authors found some similarity amongst the definitions, self-neglect was defined in a wide variety of ways: using the Webster's dictionary definition of "recluse," statutory-based definitions, and using previously-performed research formulations of the concept. (37)

      Studies of self-neglect began as early as the 1960's (38) and were referred to as "senile breakdown[s]" by two British researchers. (39) In a 1966 study, these researchers concluded that self-neglect is "an expression of a hostile attitude to and a rejection of the outside community." (40) The early British concept of self-neglect focused on behavioral manifestations such as neglect of the home and first coined the term "Diogenes Syndrome" as a label for the phenomenon. (41) Currently, Diogenes Syndrome is typically used to describe individuals who, in addition to living in squalor, also hoard. (42) North American researchers, on the other hand, used the term "social breakdown syndrome" (43) and focused more on the loss of social functioning.

      Within the North American social model, research has further divided self-neglect into two different types--an external and an internal manifestation of the phenomenon. (44) External manifestation involves those characteristics that people commonly associate with self-neglect, such as compulsive hoarding and poor living conditions. (45) On the other hand, there are those whose living conditions are not problematic; their self-neglect is an internal manifestation where they do not take care of themselves and medical issues result. (46)

      While this typology may be helpful in understanding self-neglect, it is important to note...