By now, nearly all serious political actors agree that the brunt of health and economic consequences of the COVID-19 pandemic fell upon structurally under-resourced and stigmatized communities. Disabled people were among the hardest hit by the COVID-19 pandemic, due in large part to the fact that many are cared for through Home and Community-Based Services (HCBS) and at congregate facilities, making the caregiving process more amenable to the spread of the virus. For disability advocates, the early stages of President Biden’s COVID response platform have offered glimmers of hope. The Biden administration’s American Rescue Plan (ARP) allotted billions of dollars toward programs that may benefit disabled people. 

But the Plan only did just that: allot. For the ARP to make good on its promise, community-based organizations (CBOs), caregivers, and the clients they serve must be able to actually access these allotted amounts. Each faces a host of challenges regarding access to resources, coordinated support, and inclusion. State governments and CBOs battle over the limits of political possibility; how much money can go to the public good versus the private interests of business elites.

The tension between State governments and CBOs is downstream from the longstanding Federal policy of disinvestment from State and local governments and reinvestment in pro-growth programs and initiatives. The patchwork of government programs which authorize service provision programs for disabled individuals represent a temporary resolution to the tension between States and certain disability advocate CBOs on the limits of political possibility. In an ostensible departure from this approach, the Biden administration has prioritized investment in “care infrastructure,” which responds in part to the emergence and implications of this neoliberal orthodoxy. 

For instance, the ARP’s provision of a 10% increase in the Federal Medicaid Assistance Percentage (FMAP) from April 1, 2021 to March 31, 2022, as opposed to direct fiscal or institutional support. Through FMAP, the Treasury Department can offset State-level outlays on HCBS, provided that they are used in the first place. While the cash allotments are welcome, advocates have already expressed a conservative posture in terms of actually cashing in on those funding allotments. Darby Anderson, the vice chairman of the Partnership for Medicaid Home-Based Care (PMHC) said “states need to be careful in terms of what they use the [COVID relief] money for,” so as to “avoid that cliff facing them in spring of 2022 when the funding goes away” (Andrew). Anderson’s comments betray an American realpolitik which shifts the site of political conflict over resource distribution away from Federal versus State legislatures toward States, CBOs, and caregivers -- all jostling together to ensure their own solvency amid the intermittent reappearance of fiscal cliffs. 

Many of their provisions do not meaningfully change the livelihoods and well-being of many disabled people for whom independent living is not possible. The orientation of the contemporary Disability Rights Movement (DRM) to healthcare and education support services, with its roots in the ‘Independent Living Movement’ (ILM) is the crux of tension between different status groups within the DRM. The ‘independence’ orthodoxy stems from the interrelated interests and collective action problems facing both States and CBOs. States must navigate the interests of disability advocates in the context of their other commitments to regional business interests.

In turn, this creates a tension between CBOs and the client groups they serve. Namely, between the CBOs and the groups of individuals in whom States invest, and those for whom investment is not considered worth the expense.  In these conflicts over scarce resources, severely cognitively and physically disabled individuals are disfavored. Their capacities do not permit for the idealized “independence” with respect to which the Federal government, States, and many CBOs develop policy. In the context of both parties’ embrace of policies which espouse a pro-growth and independence scope at the social and individual levels, the needs of cognitively disabled people are lesser priorities. The Individuals with Disabilities Education Act (IDEA) and Americans with Disabilities Acts of 1990 and 2008 (ADA), two milestone achievements of the DRM, evince this neoliberal and independent-living orthodoxy. 

Eva Kittay is a philosopher in care ethics and a caregiver for her cognitively disabled daughter. Kittay devoted her entire career to extolling the virtues of dependency and offering prescriptive solutions for ethicists and advocates. In her writings, she worries that “emphasis on independence extols an idealization that is a mere fiction” and “an ethics that puts the autonomous individual at the forefront” impinges on the right of dependent individuals to a life of dignity. Kittay and I share something in common which privileges this view: proximity to a family member with severe cognitive disabilities. For Kittay, that person is her daughter. And for me, it is my sister, who was diagnosed with Angelman’s Syndrome, a rare neurogenetic disorder which causes developmental delays. 

The Arc is a community-based organization advocating on behalf of the disabled people. They point out that “support coordination is critical for finding and coordinating the necessary services, supports, and resources within the community that are required by children and adults with intellectual and/or development disabilities and their families.” Without support coordination, individual families and/or their caregivers would navigate the healthcare marketplace on their own and in competition with larger, more well-resourced organizations. Not all support coordination is constructed equally. For my sister, independence is a far cry; definitely possible, but only after significant investment and support. Given the scarcity of funds and the de facto preference for independence, her case is effectively deprioritized. In competition for scarce resources, these de facto power imbalances sow distrust among the community of disability advocates, caregivers, and clients.

In “The Ethics of Care, Dependence, and Disability,” Kittay cites a story involving the American comedian Richard Pryor as support for an applied ethics of care. After developing Multiple Sclerosis and losing many of his old capacities. Pryor says that his disability was “the best thing that had ever happened to me.” Having lived nearly an entire life without being able to trust anyone, Pryor says that depending on other people to perform even the simplest activities forced him to finally learn how to trust other people. For Kittay, “the trust that Pryor had to learn when he became disabled -- and the need for trustworthiness that warrants trust -- ought to be a feature of all our lives” (Eva, 57). 

In the context of public policy, this normative ethic can emerge out of a) the recognition of each individual’s fundamental dependency, b) the commitment to human flourishing over other considerations, and c) the development of political patronage networks which respond in-kind to need, wherever and however it exists. It also elides the commitment to cost-saving, pro-growth, and idealized independence which permeates the contemporary DRM and pits disabled groups of disparate status hierarchies against one another. 

The Biden administration’s American Families Plan promises to authorize and extend much of the ARP. It also represents a new chance for disabled advocates to demand more inclusive and assured programs for the benefit of all disabled individuals, regardless of group status.

WORKS CITED

Donlan, Andrew, “$1.9T Stimulus Bill Now Includes 10% Payment Boost for Home- and Community-Based Services,” Homeland Health Care News (March 8, 2021). 

Kittay, Eva, “The Ethics of Care, Dependence, and Disability,” Ratio Juris, Vol. 24, No.1

Sabatello, Maya, Burke, Teresa Blankmeyer,  McDonald, Katherine E., Appelbaum, Paul S. “Disability, Ethics, and Health Care in the COVID-19 Pandemic”, American Journal of Public Health 110, no. 10 (October 1, 2020): pp. 1523-1527.