In a nation as obsessed with saving money and pinching pennies as the United States, it is not surprising to see a growing turn toward privatisation. This country is privatising its prisons, turning an already extensive prison-industrial complex into a for-profit empire for firms like the Corrections Corporation of America, it’s created an entirely separate incarceration industry for ‘processing’ undocumented immigrants in detention facilities, it’s privatised schools and police forces, and even fire departments.
In that context, it’s hardly startling to see that the nation clings to notions that privatised health care is the best option (despite appalling health outcomes when compared to other Western countries), and it was perhaps inevitable that states would start to lick their chops at the thought of privatising disability services, as well.
Enter KanCare, which almost went into action this month: the state of Kansas tried to outsource its disability services for developmentally disabled people to three managed care providers, for-profit insurance companies who have never actually provided care to disabled people in this context before. For those who had been relying on state assistance for aides and personal assistants, KanCare would have taken over, and the results could have been catastrophic, much as they have been in other cases of privatisation, where the goal is generating profits through every means possible, not actually serving people.
Telling indeed that privatisation is typically reserved for those who are least in a position to do something about it; children, prisoners, low-income communities, immigration detainees, and now, disabled people. While Kansas amazingly isn’t the first state to try the managed care experiment, it likely won’t be the last, especially if the state appears to be showing ‘progress’ by the metrics it uses to measure such things. And while KanCare has been temporarily delayed, the system shows every sign of going through, even if it takes a few months.
The goal with KanCare is to save money on social services, pure and simple. The state believes managed care will accomplish this function, but at what cost? Can managed care companies just offer services better, or are disabled Kansans about to endure a series of painful cost-cutting measures, which could range from humiliating to fatal? Disability activists rightly fear that KanCare could be a disaster, and it’s one that might just threaten the right to live freely in the community, one affirmed by Olmstead v. LC.
Aides provide intimate personal services, and the relationship between aide and client is a complex and ultimately very sensitive one. Depending on the degree of disability, an aide can assist with a variety of tasks of daily life, including tasks key to functioning, like bathing, cleaning, eating, and more. Since aides handle their clients, are with them during intimate and intense moments, and share their lives with their clients, disabled people are understandably anxious when it comes to forming relationships with their aides.
The fragility and duty of care in the relationship between disabled person and aide is a complicated, intersectional web, not an issue that is easy to address.
They want to be able to interview candidates for aide positions, hire and fire as needed, and exert control over the people who will have access to their bodies and their homes. Many disabled people are also joining the growing movement both within and without the disability community to push for safe working conditions, fair pay, and protections for home health workers, many of whom are low-income women of colour, frequently undocumented and in fragile social positions. The fragility and duty of care in the relationship between disabled person and aide is a complicated, intersectional web, not an issue that is easy to address.
Or easy to outsource with managed care. Managed care companies are in the habit of denying and cutting benefits, which could leave many disabled people without critically needed services like help toileting, getting out of bed, dressing, and showering. These cuts will have a negative effect on the lives of disabled people, impinging upon the ability to freely move about the community, work, act as a parent, and live freely and happily. They also represent a serious potential danger, as disabled people who need such services typically can’t fare easily with a reduction in services; a quadriplegic person, for example, could develop serious clots and other complications as a result of not being turned frequently enough.
Meanwhile, those relying on the state to help with the costs of personal care cannot exactly turn to private sources of funding for filler help. This puts disabled people in the position of having to turn to friends and loved ones for support, creating forced caregiving situations rather than built and intentional interdependent communities. These situations can create resentment, which is an emotion that leads rapidly to abuse.
The goal of managed care is to save money for the parent company and generate money for the stockholders, not to provide services to clients and patients. Managed care firms tend to create simple decision trees, diagrams, and rules, exactly the sort of one size fits all policy that can be devastating to disabled people. The level of care and support needed for two people with the same disability is hugely variable, yet, a managed care company will issue the same basic care package to both, and it will likely underserve them.
State administration of social services can be much more streamlined, efficient, and effective than the patchwork of social services relied upon today, but it requires taking the bull of late-stage capitalism by the horns and admitting that marginalised populations in the US deserve human rights and access to basic services, no matter who they are.
Meanwhile, disabled people may be facing frequent changes of aides, a serious issue for people who form lasting relationships with the people who provide intimate services in their lives. Each new aide has to be trained, and has to develop a relationship of trust and cooperation with the client, representing a net investment of both aide’s and client’s time that cannot be easily dismissed or overwritten. But it will be, if disabled people are constantly having to deal with the arrival of new aides, often without advance warning or preparation; imagine waking up on the morning of a job interview only to find that you have yet another new aide, and being late because you have to train her while trying to get ready—and you’re counting on her to help you get ready in the first place.
Managed care companies aren’t just disinterested in the health and care needs of their clients. They also pay scant attention to the rights and needs of their providers, as well. That means that aides are more likely to face exploitation, abuse, and unfair working conditions under KanCare and services like it, because underpaying people, compelling them to perform mandatory overtime, and subjecting them to unsafe conditions (such as an assignment where they have to perform tasks they haven’t been safely trained in, like wheelchair transfers) saves money for the managed care firm. That’s catastrophic news for an already exploited and abused profession, one that only just recently was offered some of the employment protections the rest of the US views as standard.
Notably, a number of hospitals and individual care providers provided documentation that KanCare was delaying payments, making payments late, or denying claims. So much for claims of a smooth turnover with easy implementation for a program that would affect a huge proportion of the state’s vulnerable residents. As with other managed care programs, the companies involved in KanCare appear to operate on the insurance-like model of denying claims as much as possible before paying them, thus potentially stretching out the time between billing and payment for weeks and months.
For large companies capable of absorbing such outstanding accounts payable, this is obnoxious but not disastrous, though it does require a dedicated and aggressive billing department to handle payments and chase down reluctant cheques. Small companies, however, could face a disaster under KanCare, as they’d be unable to compensate their staff or support providers. As such businesses closed under the pressure, Kansas could face a critical shortage of qualified providers, leading to more unsafe conditions for disabled people and, again, no net savings for the state.
These issues were of such paramount importance that the National Council on Disability strongly recommended against putting KanCare into action. A federal panel noted that the state had not considered the issues of critics and concerned members of the public enough to make a balanced decision about the best health care option for residents, and suggested delaying the turnover by a year. The recommendation was rooted in both concerns raised on the panel, and in worries that the state hadn’t heeded the valid criticisms of the KanCare proposal and what it might mean for disabled Kansans.
The recommendation reflected the stronger stance on many disability issues taken by the Obama Administration, which has proved aggressive through the Department of Justice when it comes to pursuing access and discrimination issues, and clearly takes its role seriously when it comes to defending social, political, and health rights in the disability community. With the feds ultimately in charge of whether KanCare could move forward, many activists hoped the shift to managed care would be seriously reconsidered or delayed, leaving more time to advocate for a better solution for the state’s residents.
Ultimately, the United States is heavily dominated by notions of the powers of free market capitalism and the belief that privatisation of social services, if such services should even be provided at all, will always provide a net savings for the state. This is despite ample illustrations to the contrary: when services are turned over to self-interest companies with shareholders in mind, their first duty is to their shareholders, not to the population they serve, and their boards want a chunk of the profits as well.
Putting disability services into managed care represents yet another form of the twisted notion that leaving human beings to chance saves the state money, when most evidence points the opposite. State administration of social services can be much more streamlined, efficient, and effective than the patchwork of social services relied upon today, but it requires taking the bull of late-stage capitalism by the horns and admitting that marginalised populations in the US deserve human rights and access to basic services, no matter who they are.
Photo: herval/Flickr, used under Creative Commons