Friday, February 01, 2008

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.