Elder justice is a long unrecognized human and civil rights issue that raises fundamental questions about how we value life and view suffering in old age. It’s also an issue where real federal leadership and a modest investment of resources—by Congress, the Administration and private funders—could have a profound impact. But to date, we have seen scarce federal leadership or investment by any major entity.
Elder abuse can be physical, sexual and psychological; it can take the form of neglect by unpaid and paid caregivers or be financial exploitation. The problem cuts across all demographic and geographic borders and occurs in many settings. The 5.4 million Americans with dementia
Dearth of Research and Dollars
Experts agree that what we know about elder abuse lags some 40 years behind our knowledge of child abuse and 20 years behind what we know about domestic violence. Emerging research indicates that people who fall prey to elder abuse number about one in every 10 people ages 60 and older, and 47 percent of people with dementia. For every one case we see, another 23.5 go undetected.
We don’t know why elder abuse occurs, how best to screen for it, how to identify and address perpetrators, what programs and practices are most effective in addressing it, how much it costs or how to detect or prevent it. We don’t even know what defines a successful outcome.
These knowledge gaps are rooted in our sparse investment in elder justice research and data collection. In 2009, the National Institute on Aging, part of the National Institutes of Health, spent just $1.1 million (1/1000th of its budget) on elder abuse research; according to 2011 U.S. GAO figures, the Centers for Disease Control and Prevention spent $50,000, or 0.0008 percent of its $6 billion-per-year 2009 budget. The National Institute of Justice, the Department of Justice’s (DOJ) research arm, contributed $450,000 of its own funds, plus other DOJ funds totaling $1.2 million. The total—$2.35 million federal dollars for elder abuse research—is a tiny fraction of that spent for analogous research.
Given this shallow pool of knowledge, we urgently need more research. But such research raises thorny questions: Can human subjects with diminished capacity provide consent? What if proxy decision-makers are suspected abusers? Should researchers who suspect abuse make reports, intervene or discontinue their studies? Researchers and institutional review boards struggle withsuch questions, often delaying or impeding research. To address these challenges and facilitate research, Section 2023 of the Elder Justice Act (EJA) requires the office of Health and Human Services (HHS) to promulgate guidelines for these issues. To date, it has not done so. (It has, however, recently initiated a broader review of human subjects issues, presenting an opportunity to address challenges to elder abuse research.)
Perhaps most troubling is that there is virtually no intervention research to tell us what works. Targeting this gap is among the field’s most pressing needs. Thus EJA Section 2044 requires recipients of EJA funds to evaluate results so they begin generating intervention data. The HHS research guidance pursuant to Section 2023 could promote sound methodology and strategic implementation in those evaluations.
Real progress also requires collecting uniform national data. Such data collection was mandated by 2006 Older Americans Act amendments, and deemed feasible by the HHS Assistant Secretary for Planning and Evaluation, according to the 2009 Lewin Report. But GAO 2011 stats point out HHS has yet to implement the law’s critical data-collection requirement.
Wanted: A High-Level Champion
The means to jump-start research and data collection are within reach. Today, federal elder justice efforts are addressed by a few dedicated officials juggling competing duties. For example, Assistant Secretary for Aging Kathy Greenlee in 2010 recognized “the growing crisis of elder abuse” and designated elder justice as one of her highest priorities. But AOA has numerous priorities outranking elder justice. The scenario is similar at the DOJ, where elder justice efforts enjoy support at top levels, but have budgets that look like rounding errors compared to those for analogous issues.
The $20 million proposed for EJA implementation in President Obama’s 2011 budget is important symbolically, but is a fraction of the authorized or needed amount. And appropriations prospects keep dimming.
These federal lapses reflect a deeper cultural disregard fueled by ageism and denial. Despite the millions it harms or kills every year, it elicits no national outrage. We have not effectively insisted on action by our federal representatives in either branch. Accordingly, neither Congress nor the Administration has assigned elder justice true priority on the national agenda. Nor have private philanthropists, foundations or corporations stepped into the funding and leadership breach.
Landmark reforms are won through vision, leadership and the relentless commitment of influential champions, such as Vice President Biden’s stand on domestic violence issues. Such a champion could assure attention, funding, and forward momentum for elder justice. It is time our research, budget and policy priorities related to abuse, neglect and exploitation begin to reflect our nation’s changing demographics and needs.
Marie-Therese Connolly, a senior scholar at the Woodrow Wilson Center, is director of Life Long Justice at the Appleseed network (www.appleseednetwork.org).This article is adapted from content in the Winter 2012 Public Policy and Aging Report. To read more from Connolly on this topic, visit www.agingsociety.org.
Editor’s Note: This article appears in the March/April, 2012, issue of Aging Today, ASA’s bi-monthly newspaper covering issues in aging research, practice and policy nationwide. ASA members receive Aging Today as a member benefit; non-members may purchase subscriptions at our online store.
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