Guardianship Under Assault

Indictments of guardianship and guardians are flying fast and furiously these days on Web sites and blogs:

A new site, operated by a group calling itself the National Association to Stop Guardian Abuse, explains guardianship this way:

"At present, it operates to ensnare the most vulnerable people in a larger and larger trawling net, now including those merely physically "incapacitated"! It has become a feeding trough for unethical lawyers and other "fiduciaries" appointed by the courts to protect, but many of whom become nothing more than predators."

Another, called “Abusive Guardianships of the Elderly,” exhorts readers to share their stories:

“Has someone you love been victimized by the guardianship racket? Please share your experience. We must look to each other for ideas and support if we are to stop the blatant exploitation our elderly and infirm suffer at the hands of the system and the law who is charged to protect them.”

And, in a recent response to my Feb 12, 2007 posting “Feel Good Laws or Real Reform?” about California’s conservatorship reform package, a respondent named “Sherry” had this to say:

"(The vulnerable) have become the prey for a predatory and lucrative guardianship/ conservatorship industry. In case after case, the ward's estate is pilfered by the guardian, while the ward is isolated in a nursing home against his will, not allowed contact by family members or friends, and eventually dies, bewildered and alone, all with the blessing of the court!"

Some of these critics have personal tales to tell. I don’t doubt their stories or their motives. We all know that abuses happen more often than they should. And I can think of nothing more disturbing than when “helping professionals” exploit those they’re charged to serve. Whether the offenders work for public agencies; private, non-profits; or they’re in private practice; their misdeeds leave colleagues feeling betrayed and demoralized. It casts a shadow on our field and undermines the public’s trust. But the wholesale vilification of the system and those involved, which seems to be accelerating, is deeply troubling.

The censure isn’t just coming from the public. Among professionals too there’s a tendency to impugn “the system” rather than those who corrupt it. And there’s been far too little meaningful discussion about how to fix problems, promote promising practices, offer safe alternatives, and provide the public with accurate and balanced information.

Guardianship was created to protect the vulnerable and prevent abuse and neglect. For the most part, that’s what it does. California’s Administrative Offices of the Court recently released a report, Effective Court Practice for Abused Elders, which includes the findings of a file review of conservatorships. In over 70% of the petitions filed in one county, there were allegations, suspicions by court investigators, or other indications of abuse or neglect by family members, neighbors, businesses, and others. (The report, which was funded by the Archstone Foundation, is available on line at Effective Court Practice.

The stories behind these cases—estates that have been saved and predators who’ve been thwarted--don’t get much attention or make headlines. They are, however, well known to those of us who have seen the system at its best. I admit that many of us in the San Francisco Bay Area are a bit biased as we have some of the best courts, attorneys, and professional guardians around. When I directed the San Francisco Consortium for Elder Abuse Prevention, members of our multidisciplinary team often breathed a collective sigh of relief when a particularly thorny abuse case was referred to the court, where we knew it would be rigorously reviewed.

So how do we go about restoring trust? An important first step, I believe, is to shed light on the system so that we fully understand and can explain both its strengths and shortcomings. To date, we lack such basic information as how many guardianships there are nationally, why they’re established, and how well they’re doing what they’re supposed to.

We also need to dispel damaging and persistent myths and misperceptions. As the quotes above suggest, there’s widespread belief that anyone who has a mental impairment can be placed under guardianship and that courts go “trawling’ for wards. We need to get the word out that while nearly 50% of people over 85 suffer from cognitive impairments, only a small proportion need guardianships. We also need to inform both professionals and the public about who initiates guardianships (not courts), and why—often, it’s because less restrictive legal devices like powers of attorney or trusts have been misused or when APS, police, or emergency personnel discover gravely disabled elders living in horrible conditions as a result of dementias. Once appointed, guardians can remove wards’ assets from wrongdoers’ control, initiate lawsuits to recover misappropriated assets or property, evict wrongdoers from elders’ residences, purchase needed services, authorize medical treatment, and arrange for elders to live in safe places.

Probably the most common complaint against guardianship is that it’s overly restrictive. For that reason, it’s considered the option of last resort. But as I pointed out in “Feel Good Laws or Real Reform?” the fact is, there are few alternatives. Those that are typically cited -- case management, daily money management, powers of attorney, and other advance directives--aren’t really alternatives. They might have circumvented the need for guardianship had they been implemented prior to the onset of incapacity; but once someone loses capacity, it’s too late to execute advance directives, and many social service providers can’t accept clients who are incapable of giving informed consent.

The few options available for those who have already lost capacity include representative payeeship, limited guardianships, and the appointment of surrogate decision makers on a one-shot or temporary basis. Rep payeeship, which can protect clients whose primary income is from public benefits, can be put in place for those who are unwilling or unable to consent. Under Georgia’s Health Care Placement Decision-Maker for An Adult Act, any person can petition the court to authorize placements in long-term care facilities. A few states have “protective custody,” which allows for vulnerable adults to be hospitalized for a few days when they lack capacity to consent to protective services and are in imminent danger or at risk of death. While in “custody,” their capacity and protective service needs are carefully assessed.

California has explored several options, which I discussed in my earlier posting. But for the most part, they’re untested, and many aren’t being used. Some, like Probate Code section 2952, which allows public guardians to freeze the assets of vulnerable elders when there’s cause to believe that they’ve been the victims of financial abuse, are coming into use gradually. Although the statute was enacted years ago, most counties continued to rely on temporary conservatorships (t-cons) in these circumstances. It appears that PGs have been using section 2952 more since the passage last year of a new law that requires courts to complete full investigations of t-cons. California also has a protective custody law, Welfare & Institutions Code Section 15703 - 15705.40, which has only been adopted in a few counties.

Clearly, these options need to be carefully scrutinized. For years, I’ve been calling for a statewide group to identify policy needs and perhaps more importantly, track what laws have been implemented, why some haven’t, how they’re working, and if they need tinkering.

As the population ages, more people are going to need guardianships and safe alternatives. It’s time to seriously address the problems in the system, explore alternatives, dispel myths, and earn the public’s trust and confidence. The longer we wait, the harder it’s going to be to turn things around.

Caring About Caregivers

Last month, while we celebrated my mother-in-law’s 90^th birthday at her board and care home, I spent a long time talking to Carole, the daughter-in-law of another resident, Brenda. Before moving into the home a year ago, Brenda had lived with her son and Carole, and the couple’s two pre-teen kids. The arrangement lasted five years, during which, Brenda’s mental capacity declined and Carole’s worries soared.

At first, Carole had the standard fears about accidents and fires. She feared that Brenda would forget to turn off a burner or get lost. That Brenda was still driving was a major source of dread. Once, when Brenda didn’t get home when she was supposed to, Carole found her in her car, parked on a side street, in tears; she’d been blinded by the setting sun and panicked. Another time, Brenda drove to Reno. When the family came to get her, they found her in a casino, waving a fistful of cash. Carole breathed a sigh of relief when the DMV called Brenda in for a driving test, but her relief was short-lived; they renewed Brenda’s license for another two years. Carole sat through her kids’ soccer games worrying whether she was giving them the attention they deserved. She worried that she had started telling Brenda what to do instead of asking her to do things, and that her patience was waning. Carole ended her litany of worries with one that worried me—she worried that if she ever had a momentary lapse that resulted in harm to Brenda, she’d be accused of elder abuse.

I hate to think that caregivers see our network as a threat rather than a resource. I admire people who open their homes and lives to elderly members and have been deeply moved by books like For Sasha with Love and The 36-Hour Day, which chronicle the experiences of caregivers. My favorite is the touching and inspiring Elegy for Iris, written about Iris Murdock by her literary critic husband of 40 years, John Bayley. In it, he describes his tender love for her that is disrupted by fits of rage when the unrelenting demands of caregiving and the cruelties of dementia overwhelm him.

Caregivers don’t just worry about being accused of abuse. According to a 1995 study by Karl Pillemer and Jill Suiter, 20% of dementia caregivers fear they’ll actually become violent toward those they care for, a rate that jumps to 57% if the care receiver has been violent toward them. A shared living situation and disruptive behaviors by care recipients also increase caregivers’ fears. Pillemer and Suiter also looked at whether fearful caregivers actually abuse, and found that 6% do.

In previous blog postings, I’ve called for our network to reach out to the dementia care network. Some in our field disagree. There’s a pervasive “been-there, done-that” attitude when it comes to focusing on caregivers. Some believe that framing abuse as a “caregiving issue” leads to inappropriate interventions that place victims, particularly battered women, in danger. Some fear that caregiver stress will be used as a defense to excuse the inexcusable.

Their concerns are understandable. But caregivers need and deserve help; and, in fact, there are very few programs or resources out there for those at risk of abusing. We’re in a unique position to fill that gap. We now know that caregiver stress isn’t simply a matter of how much care patients require; other factors like poor past relationships (and domestic violence), aggressiveness and violence by care receivers, mental health issues, and the “fear factor” play a role. What’s needed are screening tools to assess high risk caregiving situations and strategies to help caregivers manage aggressive behaviors, deal with their fears, and plan for their safety. If caregivers continue to feel that they will be treated unfairly or punished for asking for help, they will never reach out or get services they desperately need.

Criminal conduct should never be excused or spun as something it’s not. But in elder abuse, we deal with lots of nuanced distinctions and slippery slopes. We expect the public, judges, and juries to understand cognitive deficits, power and control, and undue influence. By comparison, caregiver stress is well within the scope of experience that anyone who has raised a child or cared for a disabled loved one can comprehend. Most of us can appreciate John Bayley’s rage and still distinguish right from wrong.

Perpetrators with Dementias

A couple years ago, a friend who runs a dementia care program asked me to talk to her staff following a tragedy involving a client, a man with Alzheimer’s disease, who'd killed his wife.

The staff was understandably upset. But what made matters worse was that some felt they’d seen it coming. They’d filed a report with APS, and a worker investigated. But since the violence was dementia-related and the client was already receiving dementia care services, the APS worker concluded there was nothing more he could do.

It was not my finest hour. The group wanted to know what they could or should have done differently; what would have happened if they’d gone directly to the police; what steps, if any, they could have taken to have guns removed from the client’s home (and those of other clients); and what the agency’s role should be when their clients are the ones abusing. I didn't have answers.

The case has haunted me. In retrospect, I doubt if these was anything they could have done differently, but it got me thinking about what we, as a profession, need to do. Clearly, we should be providing dementia care programs with guidance in what to do when they know clients have histories of domestic violence, how to assess future risk, and what to do to ensure caregivers’ safety. Not to mention working with law enforcement to ensure that violent elders with dementias are treated humanely.

The issue is particularly timely now as domestic violence theory and practice filters into elder abuse, and police are increasingly being instructed to use applicable domestic violence laws when responding to elder abuse cases. These developments are resulting in more elders with dementias getting entangled with law enforcement and ending up in prisons or institutions for the criminally insane. It's the prospect of these innappropriate responses, I believe, that has made some people in the dementia care field leery of the elder abuse, law enforcement, and adult protective services networks. Even when their clients are on the receiving end of violence, they may be subject to arrest as co-combatants.

There are no easy answers. Formerly peaceful, loving husbands who become violent with the onset of dementias shouldn't be forced to spend their final days in prisons. Yet, long-term batterers are also likely to become increasingly dangerous and unpredictable with the onset of dementia and shouldn't suddenly be absolved or excused. The fact that decline is usually gradual makes it even hairier to try to figure out the point at which people are no longer culpable for their actions.

These issues aren't going to be resolved by the dementia care community alone. Nor by the elder abuse/law enforcement/APS network. Coming up with fair and humane responses requires input from both sides. Nowhere does distrust and lack of communication between two fields threaten to have more heartwrenching results.