Abuse and Home Care Workers: Giving Policymakers the Lowdown

APS workers, prosecutors, and aging service providers know the frustration well: They discover that a personal care attendant who is being paid with public funds is abusing an elder. When they prevail upon public entities to fire the worker, they’re told “no can do.” When abusive caregivers are hired and supervised by elders, only the elders can fire them.

We also know that seniors sometimes refuse to fire abusive attendants and why. Some are afraid of their workers or of what will happen if they can’t find replacements. Attendants may be threatening them or exercising undue influence. Some seniors don’t realize they’re victims, especially when the workers have been surreptitiously draining bank accounts or transferring property. The elders may have subtle cognitive deficits. Or, they may want to help out troubled family members who need jobs.

I’ve written about the issue often, as well as the related issues of the rising numbers of caregivers who have criminal histories, the need for background checks on caregivers, and the lack of research on which to base screening decisions. I’ve devoted a page on my Web site to the issue. See Elder Abuse by Caregivers.

You’d think that the prospect of government-subsidized abuse would raise more of a hue and cry, but federal policymakers seem largely impassive. The Centers for Medicare & Medicaid Services (CMS) has addressed the need for better screening of nursing home employees, but not independent home care workers. This is despite the fact that in-home workers may spend hours, alone and unsupervised, in the homes of society’s most vulnerable members.

The concept of “self-directed care,” which is intended to empower Medicaid recipients to select, direct, and manage their own services and caregivers, stems from the independent living movement of the 1960s, which was premised on the concept that people with disabilities should have the same civil rights, options, and control over choices in their own lives as others. In recent years, members of the aging and dementia care networks have joined with advocates for the younger disabled in singing the praises of self-directed care, also known as “consumer choice” programs. And the little research that’s been done suggests that people who direct their own care are more satisfied than those who hire workers through licensed agencies. They claim that while abuses may occur, we have a safety net to address them, most notably APS and law enforcement.

Self-directed care is a boon for loving family caregivers who are struggling to manage financially. But in the elder abuse arena, we see the dark side. We see the seniors who hire the wrong caregivers for the wrong reasons. We see others being preyed upon by predators and criminals.

A recent call from the Centers for Medicare & Medicaid Services (CMS) regarding a proposed rule change that would extend the self-directed personal assistance services plan option (Cash and Counseling) may provide an opportunity to raise our concerns:

On January 14, 2008, the Centers for Medicare & Medicaid Services (CMS) announced a proposed rule change that would allow states to adopt a self-directed personal assistance services plan option in their Medicaid programs. This option would permit Medicaid beneficiaries who quality for personal care services to receive a cash allowance that could be used to hire, direct and train their own personal care workers - including qualified family members - rather than receiving home care services from an agency. Many states currently have such options allowed under temporary waivers in their Medicaid programs. This rule change would allow such programs to become permanent state options. The notice of proposed rulemaking was published in the January 18, 2008 issue of the Federal Register. Public comments regarding the proposed rule change are due February 19, 2008. To comment, go to CMS.

The request for comments, which explains the programs and CMS’ goals is over 100 pages long. Buried deep within (beginning on page 52) are the sections on “risk management” (the document does not directly mention potential abuse). The proposed regs require states to provide plans for mitigating risk to consumers, including measures for determining who is eligible to serve as workers and when surrogate, or representative, decision makers should be assigned for those with impairments. Among the issues that CMS is asking for comments on is whether criminal background checks should be required. Seems to me like an excellent opportunity to bring up some of the problems we’ve been struggling with. My own list of recommendations includes:

The Need to:

Strengthen the safety net. As more elders hire persons who are unsupervised by agencies, it has clearly placed greater demands on APS, law enforcement, public guardians, and others. In addition to added resources, these entities need guidance and authority to intervene.

Provide guidance and help to elderly consumers in finding, screening, hiring, and supervising workers. Specifically, consumers need screening processes that identify high risk workers, including but not limited to criminal background checks

Conduct research to identify high-risk situations, including research in how to assess criminal background data

Expand the pool of workers

Clearly the protective service networks have a stake in these plans and in working with the consumer choice network. I urge you to make your ideas and experiences known.

Consumer Choice or Government-Subsidized Elder Abuse?

Years ago, San Francisco’s multidisciplinary team was discussing a case involving flagrant abuse by a chore worker. When the group learned that the worker was being paid with public funds through the state’s In-Home Support Services program, we turned to Mary Counihan, supervisor of our APS and IHSS units, and chimed in unison “Fire him!”

It wasn’t that simple, Mary explained. Under IHSS, clients can either be provided with workers through licensed agencies, or they have the option of hiring and supervising their own “independent providers,” including family members, with IHSS funds. In our case, the abuser was an IP, and the victim refused to fire him. Mary went on to explain that it was younger adults with disabilities who’d advocated for allowing IHSS “consumers” to take a more active role in managing their own services, which included making hiring and firing decision. It was a matter of client autonomy.

But autonomy was our mantra too, we complained. Still, paying abusers with public funds didn’t sit well with many of us.

The county eventually exercised its option to change the “mode of service,” which meant requiring the client to accept services from a licensed agency. But for many of us, the case was our first exposure to the incipient “consumer choice” movement. Flash forward ten or so years. The movement has flourished, fueled by the 1999 Olmstead decision, a Supreme Court case brought on behalf of two developmentally disabled women who’d been living in an institution but wanted to live in the community. Their lawyers successfully argued that the state had an obligation, under the Americans with Disabilities Act, to reasonably accommodate the women in the community. In essence, Olmstead framed community-based, long-term care as a human rights issue. It further got translated to mean that states had to offer consumers more options.

Since then, many in the aging services community have joined the disability community in support of consumer choice. Prominent organizations like The National Council on the Aging have been among the foremost supporters, and the Robert Wood Johnson Foundation has funded projects to increase opportunities for consumer choice.

In the meantime, APS and IHSS programs have continued to struggle to protect clients from abusive chore workers. It hasn’t been easy. Over 90% of IHSS clients choose the IP option and half hire family members. In California, repeated attempts by counties to change the mode of service of clients whose workers have abused them have been successfully challenged. Counties have challenged the challenges, but it seems to be a losing battle. According to Mary, there’s widespread agreement around the state that if clients want to keep their abusive IHSS workers, there’s little counties can do.

Okay, those of us in elder abuse prevention are jaded. It’s hard not to be when we hear about rampant abuse by chore workers and know that elders hire troubled offspring who can’t find better jobs. And then there’s the critical shortage of workers, the lack of screening, and recent studies showing disturbingly high rates of chore workers with serious criminal histories. Not to mention the rumors that probation and parole officers are actually encouraging their clients to become chore workers. And while consumer choice advocates acknowledge that some workers abuse, they seem to shrug off the risks and point to the “safety net” of APS and the elder abuse prevention network.

For example, the NCOA publication Myths and Realities and Consumer Choice includes as Myth 2: Consumer-directed services are not appropriate for elderly persons with disabilities or for individuals with cognitive impairments. The authors counter the “myth” with “Studies have shown that many elderly individuals with disabilities and persons with cognitive impairments can express daily preferences.” It’s true that many cognitively impaired consumers can express preferences, but that’s not what has me worried. It’s their ability to screen workers, detect exploitation, seek shelter, and withstand undue influence. The same publication lists as Myth 4, “Consumer-direction places older adults at greater risk,” and goes on to point out that “There is no evidence that the consumer direction model of service delivery is inherently “riskier” than professionally-managed services.” I have trouble with this one too. Studies I’ve read that compare abuse rates by IPs with agency-managed workers do suggest lower rates of some forms of abuse by IPs, especially family IPs, but they rely on elderly consumers’ perceptions of whether or not they’d been abused, which, as we know, is by no means a perfect indicator. Many victims don’t know they’ve been abused, are afraid to say so, are manipulated by their workers, or are more concerned with seeing troubled kids get jobs than their own safety.

I’m not against consumer choice. In fact, I’m a firm believer that responsible family caregivers should be compensated for the enormous contributions they make. What’s troubling to me is that the “safety net” isn’t working and members or our network have not, to my knowledge, been involved in state and federal policy discussions about consumer choice. Dealing with abuse by IPs is tricky business, which has gotten trickier in the age of identity theft and worker shortages. And then there are the unanswered questions about capacity. How do you define capacity to screen, supervise and fire workers? Since cleaning up messes is harder than avoiding them in the first place, shouldn’t we be involved in policy discussions about consumer choice, building relationships with the consumer choice network, explaining the barriers we face, and figuring out how to make consumer choice programs as safe as possible? I think so.