One area in which the Obama Administration has been quietly successful is in advocacy for disabled people. The Department of Justice under Obama, for example, has pursued a number of cases fighting forced institutionalisation and other abuses of disabled people, and it’s also turned an eye to abusive group homes and institutions like the notorious Judge Rotenberg Centre, which uses electric shock treatments on developmentally disabled students to ‘extinguish’ unwanted behaviours.
This extends not just to disabled people themselves, but also to care providers; of course, advocating for care providers offers some intrinsic benefits to disabled people, but it also acknowledges that care providers play an extremely important role in society, and many are highly vulnerable to economic and social abuse. These human rights violations shouldn’t be tolerated for any worker, anywhere, for any reason, but particularly in the case of workers providing intimate personal services. For disabled people, there’s a clear benefit to having a care provider who is compensated appropriately, who works a safe number of hours, who has access to paid leave and other benefits, and who is able to have a rich personal life outside of work.
And right now, many of these things are not available to care providers. First, the United States relies heavily on an extremely dangerous network of unpaid family members who are expected to provide caregiving work 24-7, with no relief or options for assistance. Family caregivers can’t work outside the home because they have no access to relief caregivers, and can find themselves trapped with disabled family members who need continuous attention. The alternative is institutionalisation, something many disabled people protest, and many families agree, taking any means possible to keep loved ones at home rather than running the risk of abuse in an institution.
This is a recipe ripe for abuse and exploitation, though, because it sets people up in an extremely high pressure situation. While family caregivers love their family members deeply, they need time off, which means they need access to consistent relief care. This was once an option, before the days of sharp budget cuts; adult day care centres, home health relief workers, and other choices were available to help family members manage caregiving needs. Today, though, these options are thin on the ground, and the results are dangerous, and sometimes explosive.
Beyond the issue with family caregiving and the exploitation of family members, primarily women, lies the issue of low-paid caregiving, a serious issue in the United States. Under a loophole in the labour law, caregivers can receive less than minimum wage and are exempt from overtime because they’re classified as ‘companions,’ even when the services they provide extend far beyond companionship. Since 2011, the President has been fighting on this issue, demanding a change to the law to protect home caregivers and to limit their exploitation.
Many caregivers are making less than minimum wage while their agencies bill far higher, a clear and obvious case of exploitation. Women are disproportionately represented, and many are women of colour, including undocumented immigrants who have few legal options when it comes to protecting themselves from abusive employers who force them to work long hours for minimal pay. It may be necessary to take on several jobs and a large number of clients to make ends meet, and of course benefits like sick days, health care, and paid vacation are not available, even though caregiving is emotionally and physically draining and such benefits can help caregivers stay healthy and provide the best services possible.
Roughly 1.79 million people (it may be as high as 2.5) in the United States provide in-home care, and the rule proposal applies to those employed by agencies and third parties, as well as families who need workers to provide skilled nursing services. Almost half of the caregivers in the United States rely on government benefits like Medicaid and food assistance to survive because their work is so low paid that they cannot support themselves independently, so the change is clearly desperately needed. For economic success, let alone growth and recovery, there need to be fewer workers in the US living in poverty.
Some states already protect caregivers with more aggressive laws, but Obama’s proposed rule change in 2011 would have ensured that all states did under a comprehensive federal law. Unsurprisingly, Republicans and big business in the US brought significant weight to bear on ensuring that the rules didn’t pass into law, because they would have represented a substantial increase in costs for care providers. The thought of losing out on potentially massive profits for home health agencies was clearly deeply upsetting to numerous lobbyists, who went to bat to protect their bank accounts at the cost of their workers.
Consequently, a drawn-out battle over the proposed changes has occurred as various parties rotate in and out of the discussion. The White House is finally expected to issue a ruling, and parties on all sides are bracing for battle. Advocates for home health workers as well as their allies, such as labour activists and some disabled people, are ready to celebrate the passage of a bill that’s been in the making since the 1990s, when they first started pressuring President Clinton to address the problem. However, they’re worried that the bill may have been diluted by lobbyists with their own vested interests, most of which run contrary to those of workers.
Meanwhile, the opposing side is determined to take the matter to court if it doesn’t get what it wants, claiming that the proposed rule would be ‘economically devastating’ to companies that provide home health workers. It would certainly represent a substantial increase in costs, but in states where similar rules have already passed, adjustment has been possible, and relatively smooth. This would seem to suggest that these claims have less to do with legitimate concerns about the quality of care available and how to provide the best services, and more to do with the desire to concentrate wealth among the corporate elite.
That people are willing to lobby against the interest of workers in no surprise in the US, a nation which seems to pride itself on developing new and creative ways to exploit members of the working class—in the news this week also is an explosion of protest among guest workers for McDonald’s who are enduring abusive conditions. In this case, the bitter fight over better pay for home health workers also reflects the hatred for disabled people in the nation, who aren’t considered deserving of the care and support they need to live comfortably and safely.
That the workers who provide skilled nursing care to older adults and disabled people can be paid less than minimum wage is a poor reflect on the nation’s social attitudes as a whole. That an argument over whether labour laws should be updated to eliminate the loophole that allows this to continue should drag out over two years is a sharp indictment of US culture. It’s long-past time for the US to compensate home health workers fairly, in addition to addressing the heavy reliance upon unpaid family members.