Across the USA, solitude has become a deadly threat for hundreds of thousands of senior citizens living at home.
Last year alone, state adult protective services (APS) intervened in more than 142,000 cases to protect seniors at risk from what is clumsily termed “self-neglect” – seniors who have become too physically or mentally incapacitated to care for themselves and have no other care providers.
Overall, according to new federal data obtained exclusively by the New England Center for Investigative Reporting (NECIR), state-based APS agencies completed more than 713,000 investigations in fiscal year 2017. The agencies identified nearly 235,000 victims of abuse, including the self-neglect cases. About 10 percent of the total abuse victims counted were under age 50, because some states include abuse or neglect of younger adults with disabilities.
These numbers, part of an initial attempt by the federal government to track maltreatment of seniors nationwide, understate the scope of the problem, and probably dramatically, according to the agencies compiling the data.
“The elder abuse data is not complete. It’s correct in terms of what’s reported, but there are so many cases that aren’t reported,” said Alice Page, an adult protective services and systems developer with the Wisconsin Department of Health Services.
“We're way behind in elder abuse reporting than, for example, in child abuse reporting. It's just a different system. There's much more emphasis and resources that have been put into child protective services than there have been into elder abuse or abuse of adults. And so we're sort of playing catch up.”
Elder abuse can range from physical or sexual assault against vulnerable seniors to financial scams to abandonment or neglect by caregivers. The most common threat is self-neglect: an elderly person unable to provide for their own clothing, shelter, food, medication or other basic needs, and having no one to provide care for them. It is a problem that is growing as the population ages.
States have operated under a federal mandate to collect data on child abuse for decades. There is no federal mandate to do the same for elder abuse and neglect.
“We have often referred to elder abuse as a silent issue. For decades people just didn't want to address it at all,” said Edwin Walker, deputy assistant secretary for aging at the Department of Health and Human Services, which is leading the effort to build the national database.
“In the mid-1970s, the federal government got in the business of charting out guidelines and parameters for addressing child abuse. But the federal government never did that for adult protective services or elder abuse.”
During the past several years, the Administration for Community Living has embarked on a voluntary effort with the cooperation of state APS agencies to compile a national database of abuse of seniors living at home. For the most part, abuse in nursing homes or other settings is managed by other agencies and counted separately.
A state-by-state breakdown of the data provided to NECIR shows obvious holes in the data.
For instance, the new totals do not include reports from six states – New Mexico, Oregon, Nevada, South Dakota, West Virginia and Wisconsin – for a variety of reasons.
West Virginia, for example, does not collect statewide data on maltreatment of seniors, leaving it to each county to keep their own tally. Wisconsin counts its data on a calendar year, not a fiscal year, and thus has not been able to produce reports for the time period the federal data system uses.
Oregon sent its data in late and was not included in this year’s report. Officials in Nevada and South Dakota said they have been gearing up to provide data for the new federal reporting system called the National Adult Maltreatment Reporting System (NAMRS) and expect to be included in next year’s report.
There are other anomalies – New York reported nearly 40,000 investigations of alleged abuse or maltreatment in 2017, but the federal data indicate New York had zero confirmed victims. That’s because New York’s law does not identify victims; instead the state determines when there is a level of risk to a senior that justifies the state providing services, which it did in 4,700 cases last year, according to the New York State Office of Children and Family Services.
States all have different standards for determining when abuse or neglect has occurred, meaning the same set of evidence may qualify as a “substantiated” abuse or neglect case in one state, but not in another. And the new report acknowledges “no two states reported on all of the same data elements.”
Still, experts in the field all agree that self-neglect is one of the most challenging issues in elder protection, and it dominates the work of Adult Protective Services units across the country.
“Self-neglect appears to be a very serious problem in our society not a new problem. But it is, as you've been picking up, approximately two thirds of the cases reported by APS nationwide,” said Holly Ramsey-Klawsnik, director of research for the National Adult Protective Services Association.
Ramsey-Klawsnik cautioned that the prevalence of self-neglect in state case files does not mean this is the most common form of adult maltreatment – only that it is the one most readily identified. “Self-neglect cases are so much more visible,” she said.
Neighbors or friends or social workers can tell when a senior’s house has fallen into disrepair, or an older person in the grocery store is unwashed or badly unkempt. It may be harder to tell if a senior has had money stolen from them by a caregiver or if they have been denied access to appropriate medical treatment.
Self-neglect cases also come with the underlying problem that adults are generally assumed to have autonomy and control of their decision-making, so it is hard for a government agency to know when to intervene, particularly if the elderly person rejects assistance.
Some people “just refuse to accept help for whatever reason,” said Cynthia Lien assistant professor of medicine at New York’s Cornell Medical Center. But she says there is also “a large population who just are incapable of giving up a coping mechanisms or repeat behaviors that they've developed over years,” even when those behaviors are no longer working.
“That manifests in things like an unsafe home environment or hoarding disorders or refusing to see a doctor because maybe they had a bad interaction in the past with a physician and they just don't trust the health system. “
And people have a right to not take proper care of themselves, adds Alice Page from Wisconsin.
“We talk about the dignity of risk in these cases,” she said. “All of us, there's risk to every decision we make, and some people just choose to live with more risk and accept the consequences. And if you give people choices that involve risk, that enhances dignity.”
But self-neglect is not simply an issue of risk for the senior individual making the poor decisions.
“We do know that self-neglect increases illness, increases emergency room use, increases hospitalization, increases nursing home use, increases hospice use and hastens mortality,” said Ramsey-Klawsnik. “Self-neglect is costing society a lot of money when they have to go to the E.R. and have no money to pay for insurance.” People who self-neglect are also at higher risk of other forms of abuse or exploitation.
Beyond that, a senior in an apartment who is hoarding or failing to take out the trash may be creating an unhealthy environment or a vermin problem for everyone else in the building.
Still, states struggle with how to intervene.
“We can't force somebody who's just making poor choices to do something," said Kathy Morgan of Washington State’s Aging and Long-Term Support Administration. “Although our investigators do a really great job of talking with people and trying to assist them with services or supports that may be able to put in place if they're willing to do that."
State assistance in self-neglect cases can range from referrals to Meals on Wheels or in-home care services to cognitive assessments that could lead to assignment of a guardian if the senior no longer has the capacity to make decisions on their own.
While the data in NAMRS is full of gaps and aberrations, what is clear is that the number of abuse and neglect cases is soaring nationwide.
• Washington state had about 19,000 elder abuse reports in 2012 and 49,000 reports in 2017, Morgan said.
• Massachusetts confirmed 7,100 abuse and neglect cases in 2015 and 9,800 in 2017.
• Ohio reported about 16,200 reports of abuse, neglect and exploitation of seniors in 2017, up from about 13,150 in 2014.
• Pennsylvania officials investigated 13,000 abuse reports in fiscal year 2014 and nearly 18,000 in fiscal year 2016.
Part of this increase is simply a function of better reporting systems in the states, and more public awareness that elder abuse is a problem that should be reported to authorities.
But part is also because there are simply more seniors living in communities around the country, as Americans live longer, remain in their homes longer, and survive ailments that would have been fatal in prior decades.
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New data show hundreds of thousands of elder abuse cases even with huge reporting gaps