Tomorrow at 3pm est, Caring Across Generations will be hosting an event on men who care. Here’s how Aisha Adkins describes it:
“On Tuesday, we’re going to sit down with Devon Still, who is an ex-NFL player who was in the Man Enough series and is a caregiver for his daughter Leah, the director of Color of Change Rashad Robinson, and a group of Black male caregivers and care workers. These men will be open and vulnerable as they share their stories of being caregivers in a society where care is undervalued, stigmatized, and viewed as shameful.”
You can watch it live on Facebook.
People have long been calling for changes to the way residential care is provided — now’s the time to make it happen.
There have been horror stories about nursing homes since the beginning. Regulators, the media, and the public typically pin the blame for each incident on ‘a few bad apples’ no matter how many horror stories came out.
Now, there’s the pandemic. It no longer seems possible to treat any of this as an isolated incident.
“Within one year, the [US] has reported more than 136,000 coronavirus deaths linked to long-term care facilities — more than one-third of all coronavirus deaths in the country. Now, the nursing home industry faces a financial crisis.” [source]
As Elizabeth Renzetti wrote recently:
“Anyone who’s had an eye on the news recently is aware of the atrocities happening in some long-term care facilities, and the grief and rage of family members who stand outside the doors, unable to help their [loved ones] inside. Many doctors and nurses have bravely come forward to voice their horror at what’s happening — even if it comes at huge professional cost. These are all positive developments arising out of a grotesque societal sickness.”
Before you bemoan kids these days, in 2004 Caring For/Caring About noted: “A century ago, 3 percent of the elderly and of those with disabilities lived in institutions while about 1 percent do so today.”
If you’re curious about the history of residential care, The Local has a wonderful long-form article and Muriel R. Gillick’s Old and Sick in America provides a deeper investigation into the roots of the current system.
We know community care isn’t the answer. Pat Armstrong and Olga Kitts point out that “community care” is often a euphemism for unpaid care provided for by whoever can’t bear to see people go without care.
Many people end up in residential care as a last resort, when keeping someone at home has long become untenable. Sending them back home trades one set of unsafe conditions for another.
Residential care doesn’t function in place of unpaid care work. Rather, it functions in addition to unpaid care work provided by family and friends, as well as paid care provided by private duty aides, one-to-ones, and specialists.
When people are forced to choose between the false dichotomy of care in an institution or in the home, it’s no surprise that nearly everyone prefers to remain in their homes. “However, there are many indications that people might choose different solutions if only they had different options available to them.”
People may prefer to hire providers of hands-on and administrative care, while continuing to rely on family and friends for emotional support. Senior residences that provide meal, laundry, housekeeping, and other services are popular.
“the appeal of these options is the fact that people maintain control over their own lives — they have their own private spaces and they have options available to them with regard to services and programs.” [source]
We need models of care that not only keep people physically alive, but treat them as people.
As Elsa Sjunneson writes in Disability Visibility:
“There’s something really horrifying about realizing people don’t see you as an adult when you are in fact an adult. There’s something angering about it, too, that people assume based on the kind of body that you live in, or the sort of marginalization that you carry within yourself, that you can be an adult only if someone helps you.”
There are already alternative models to the current style of residential care facilities in the US.
The Green House project was inspired by Barry Berman’s experience of watching his mother’s decline after being moved to a nursing home he owned. When moved home and provided with 24/7 care, she quickly thrived. He then designed a new nursing home designed to emulate the experience of home care.
The Pioneer approach for residential care provides residents with home-like common spaces, including plants and pets, the ability to help with household chores, and make decisions about their schedule.
Similarly, the Eden model employs three key components (children, plants, and companion animals) to provide variety and spontaneity in a home like setting.
The Butterfly Household Model of Care rests on the belief that for people experiencing dementia, feelings matter most, that emotional intelligence is the core competency and that “people living with a dementia can thrive well in a nurturing environment where those living and working together know how to “be” person centered together [source].
The Montessori Method has been adapted for use to engage dementia patients.
Wellspring focuses on valuing the labor of line staff employees in all departments [source].
Residential care facilities using alternative models have fared significantly better during the pandemic.
None of these options needs to be right for every situation, because there is no one right answer. We could encourage all of these models and the development of new ones, just like we encourage the development of new models in business.
“In Italy, so-called social cooperatives transformed the care industry through shared ownership by both caregivers and their clients.” Cooperative Home Care Associates in the Bronx is the largest worker co-op in the US. [Everything for Everyone]
In Labors of Love, Jason Rodriquez shows how the US health insurance reimbursement system forces non-profit nursing homes to act like for-profit nursing homes or go out of business.
When the government has created a problem through financial incentives and regulations, the government has the ability to fix it.
Leah Lakshmi Piepzan-Samarasinha captures the careful balance of meeting our needs within this broken system:
“As we both push to maintain Medicaid but know that existing structures of paid care attendants are underpaid, abusive, and difficult for many of us to access; and as we grow collective care structures but know that for many of us they are not accessible due to our isolation, our desire to have someone other than our friends wipe our asses, a lack of friends or social capital, or our knowledge that even if we have those things, people get exhausted: What are our dreams of a collective mutual-aid network, of a society where free, just, non-gatekept crip-led care is a human right for all? What if we could make a society-wide mutual-aid system for care based on disability justice principles?” [source]
Are things really on the brink of change, or is this just a way to wring cash out of Congress to uphold the current system?
“The American Health Care Association and National Center for Assisted Living, which represents more than 14,000 nursing homes and other assisted living communities, released a statement on Wednesday calling on Congress to approve $100 billion in relief funds and dedicate “a substantial portion” to long term care.” [source]
In The Care Crisis, Emma Dowling asks:
“How come the responsibility for ensuring the wellbeing of the elderly, vulnerable and frail is being handed to private equity companies, US hedge funds and international real estate investors, whose entire raison d’etre is to operate with the kinds of high-risk financial practices designed to maximise financial returns on investment? Such warning signals, however, have not propelled a rethink of privatisation, marketisation and financialisation. Instead, spending cuts have turbo-charged these trends and indeed created new opportunities: where cuts have hit, they have created new gaps to which further privatisation and outsourcing, marketisation and financialisation are considered to be the solution.”
Will things change for the better, or will we, as Dowling fears, continue in the same toxic direction?
Gillick explains how private equity firms buy nursing homes to quickly re-sell them at a profit, in much the same way that get rich schemers flip houses.
Like with a house flip, private equity firms go in to quickly and cheaply re-do whatever will make things look good at a glance, without worrying about long-term viability. And they do it with someone else’s borrowed money, so they have little of their own skin in the game.
Staff who survive the layoffs see their pay and benefits cut. They meet minmum care requirements, without worrying about the impact on residents. “The result is a decline in the quality of care...For short-stay residents, this means more new pressure ulcers and preventable infections.”
Private equity firms take steps to obscure responsibility through complex ownership structures to manage the potential repercussions of the inevitable litigation. “One plaintiff’s lawyer in Florida stopped taking on nursing home litigation cases, complaining that to litigate the last case he had agreed to try, he had to sue twenty-two discrete companies.”
Over and over again we are told that there is simply no money to pay for quality residential care. We know there is always money. Dowling succinctly makes the point that:
“Austerity measures serve to convince individuals that the only person they can truly rely on is themselves, supported, at best, by their family, and implying a greater reliance on informal support and charity provisions. Yet the crisis obscures as much as it allows us to see: austerity measures that offload the cost of care onto the shoulders of the most disadvantaged in society are fueled less by necessity than by an ideological agenda.”
What’s your vision for providing 24/7 care?
Who’s doing this well right now?
How do we spread care oriented towards people, rather than profits?