The happenstance that puts Blogging Against Disablism Day on May Day means that every year, I get to talk about intersections between two of my favourite issues: labour rights and disability rights. Last year, I looked at people with disabilities in the workplace, and the structures that keep us underemployed and poor. This year, I’m flipping the tables a bit to talk about home health workers; not unpaid family caregivers[1. Although that is also a critical labour rights issue.], but specifically paid personnel who provide services in the homes of people with disabilities.
Home health workers provide vital services for people with disabilities, including access to medication, assistance with personal hygiene, help with wheelchair transfers, and other things their clients may need. Some are literally a lifeline for their clients, and others make their lives easier and more comfortable, enabling independence and interdependence for people with disabilities who might otherwise be trapped in institutions. Home health care workers, in other words, are a critical part of access for people with disabilities, and an important part of our lives in some cases.
Funding for home health services is sometimes provided through government programs, and in other cases they may be paid by insurance plans, or out of pocket. Many people with disabilities lack the financial stability to pay home health workers on their own, so they are dependent on assistance, which puts them in an awkward position; someone else is paying the people they rely on for support, and that someone may be creating unfair and abusive working conditions. Yet, protesting those conditions might mean a suspension of services, which could be dangerous or fatal in some cases, which forces people with disabilities into a situation where they may feel like they need to be complicit in exploitation to stay alive.
The racial issues bound up in the treatment of home health workers are a very important component in this equation. Many are people of colour and nonwhite people, including not just immigrants but natural-born US citizens, some of whom come from families with a long tradition of working in service. Such workers are often viewed as easy to exploit because it’s assumed that they aren’t familiar with the system and don’t know their rights. There’s an assumption that of course people of colour and nonwhite people would be working in a service class, and of course they should be paid less, yet another legacy of racism and insidious attitudes about whose work is valued, and who should be providing unpaid work.
Undocumented immigrants also work in the home health industry, and many do lack knowledge of their rights under the law because they haven’t been provided with the tools they need to defend themselves in the workplace. This puts them in a very vulnerable position for exploitation; like other home health care workers they may be paid less than minimum wage, forced to work long hours, or asked to perform tasks that are outside their scope of training and ability.
Things like wheelchair transfers, for example, require strength and training. Home health workers may be told to ‘figure it out’ when faced with a request they can’t actually accommodate, and thus may perform unsafe procedures because they want to help their clients and are afraid of losing their jobs. When a worker expresses concerns about safety or refuses to perform a task, that can lead to retaliatory cuts to hours.
Some are assigned large numbers of clients to assist, which means less time spent with each client. It isn’t always possible to provide all the needed services in the time allotted, an issue that can give rise to sloppy work because people are in a hurry. This also means that symptoms of emerging side effects, complications, and new medical issues might not be spotted in a timely fashion, because workers don’t always get a chance to really know their clients; behaviour that would be considered abnormal when compared to how a client usually acts if someone is seen for three hours every day might not be identified if the caregiver only has 30 minutes to an hour with the client, for instance.
The conditions can also create dangerous situations for people with disabilities. People under pressure and in a hurry get impatient and frustrated easily, because they are being forced to do too much. This can lead to caregiver abuse, which may range from not allowing people to complete tasks independently and in their own time to actively hitting or restraining clients. Explosions of violence, verbal and physical, endanger clients who may be afraid to complain or request a different service provider because they fear a gap in their coverage that might lead to being left to fend for themselves for hours or days.
Until very recently, home health workers were actually exempt from minimum wage and overtime laws in the United States. This was changed with an executive order from President Barack Obama, who enacted wage and working hours protections last December. It was a significant step, but only the first of many, because the system of worker exploitation is still in place, and it will continue unless the social attitudes underlying it are addressed.
One reason home health workers were left unprotected was because they were classified as ‘companions,’ rather than skilled caregivers performing services that require training, experience, and certain physical abilities. They were not performing duties like light housekeeping and companionship, but they were treated like they were, and their skills were not taken seriously. Part of the reason for this was because of social attitudes about people with disabilities and older adults, who are viewed as a lesser class. Thus, people providing services to that lesser class were viewed with even more contempt.
Home health care workers have been fighting for better protections and recognition for decades, making the executive order last December a significant victory for their rights. They still need better wages and working conditions, though, because all workers deserve safe, clean, healthy working conditions and a fair wage, and that includes care providers; and all people with disabilities who need assistance deserve workers who are able to provide them with the time and sensitivity they need.