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.
