Editor’s Note: Smith and Stramondo have co-authored for IJFAB Blog in the past, with the widely read “Musings on the Value of ‘Awareness’.” You can see a shared bio at the end of today’s blog article.
Until this past Thursday, most folks who aren’t directly involved in the disability rights movement in the United States would be down-right shocked to hear that its biggest priority since the passage of the Americans with Disabilities Act (ADA) has been Medicaid funding priorities. Yet, it seemed like, all at once, America was introduced to the political action that has been happening for more than 25 years to try and produce parity between federal funding spent on nursing homes versus long term care in the community.
This black and white image shows a room packed with protesters, many using wheelchairs, using a sit-in to protest the San Francisco Department of Health, Education and Welfare in 1977. They demanded the government implement existing laws to protect the rights of disabled persons. The protesters are in concentric rings around a woman who is speaking with a microphone. She appears to be standing. There is no empty floorspace. Such techniques have long been used by disability rights activists. In recent decades, they have been used continuously in protests like that of June 22, 2017 at the Capitol, against cuts to Medicaid funding and elimination or reduction in federal protections for how that money is spent on persons with disabilities.
Currently, there are federally funded programs designed to provide long-term care to some disabled people via community based supports and services (i.e. personal care attendants that come into your home to help with non-medical tasks like dressing, bathing, laundry and meal prep). However, federal law is written so that states must provide nursing home care to folks who can’t afford it out of pocket, while the provision of this sort of community based care is optional.
This ends up meaning that, in virtually every case, these “optional” programs are wrapped in red tape and wait lists, while the default of nursing home care is relatively easy to obtain. Perhaps, unsurprisingly, this bias toward institutionalization in nursing homes that is written into federal law is designated as the Institutional Bias by the jargon of the disability movement. The Affordable Care Act made some progress on this issue by providing federal funding incentives for states to include community based long-term care programs as part of Medicaid expansion, but even these programs were subject to disincentives of the red tape and wait lists of the institutional bias. Thus, slow and steady, the disability movement has kept at it, trying to reform policy so that more disabled and elderly people have the right to live outside of the isolation of a nursing facility.
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We don’t have space here to fully address the reasons why Medicaid funding is suddenly getting attention specifically as a disability rights issue, but we wanted to take it a step further and highlight arguments showing that these Medicaid cuts aren’t just a disability rights issue, they are a specifically a feminist disability rights issue.
It is well documented that women – and especially women of color – are disproportionately both the givers and receivers of long-term care. Nancy Hooyman points out that gender, race, and socioeconomic class all contribute to a situation in which health disparities result in women being “73 percent of nursing home residents and 67 percent of home healthcare users” while they “increasingly are cared for in both institutional and community based settings by underpaid young women of color, many of whom are immigrants, and by unpaid female relatives.” In effect, these data show that oppression generates more of a need for long-term care for women while also exploiting other women in order to provide that care.
We would argue that this inequitable situation can be, at least partly, attributed to the institutional bias. Because care giving is such a gendered activity, it is much more likely for wives, mothers, daughters, granddaughters, nieces, and such to provide care on an unpaid basis to keep their husbands, sons, fathers, grandfathers, uncles and so on out of a nursing home than vice versa. For example, just the other day, our neighbor told us that she had recently quit her job in corporate America to keep her brother, who had experienced a stroke, out of a nursing home. This is not an isolated anectdote. There is a pattern of gendered behavior that puts women in institutions while men are cared for at home on a “voluntary” basis by women.
There are some, very limited state programs funded through Medicaid that actually allow family members to receive compensation for the long-term care they provide their loved ones. But, unsurprisingly, these programs are themselves subject to the institutional bias and, accordingly, can be enormously difficult for elderly and disabled people to even learn about, never mind enroll in. To ensure that the women being cared for are receiving adequate care and the women providing it aren’t being straightforwardly exploited, it would make sense to expand and improve federally funded, community based long-term care programs. Such programs should be entitlements and not optional. They should give the recipients of care a choice about where they live and who is providing their care and ensure fair pay to whomever is doing the work of care, whether they are a relative, friend, agency employee, or respondent to a want ad on Craig’s List. This is pretty close to the sort of policy ADAPT and other disability rights organizations have been fighting for.
Ultimately, the barrier that stands in the way of this feminist disability rights activist’s utopia are the same under Donald Trump, Mitch McConnell, and Paul Ryan as they were under all of the previous legislative leaders, Republican and Democrat: money and political will. The gains that have been made despite resistance because of their “cost” are under serious threat because of this same reason. We hope that Thursday’s news coverage helps generate the political will to resist attempts to roll them back, or else it will be women who suffer the most.
Leah and Joe are partnered and live in San Diego, CA with their daughter and two dogs. Their second date occurred when Joe invited Leah to visit him during an ADAPT nonviolent direct action at The Housing and Urban Development Headquarters in Washington, DC, where she was interning for Congressman Charlie Gonzalez (D-TX). ADAPT was advocating for an increase in affordable, accessible, integrated housing that would allow more disabled people to live in the community.
