Healthcare Beyond the Doctor’s Office: Issues of Vulnerability in the AHCA (Lorraine Cuddeback)

As the House scrambles to generate support for the American Health Care Act (AHCA), much of the rhetoric about the pros and cons of the bill has been about cost, often coupled with the observation that the “biggest” losers from the bill would be the very people who voted for Trump en masse. All of this discussion is necessary and important, but in the midst of this media-fueled schadenfreude, I want to take the opportunity to reflect on two other groups of “losers” who have just as much, if not more, to lose from the revisions in the AHCA: people with disabilities, and their healthcare workers.

One of the essential components of the AHCA is block grants to states for Medicaid. Currently, federal money for Medicaid is distributed according to a formula that reacts to the market costs of healthcare — thus, as the costs of healthcare rise, so does the Medicaid funding. This, coupled with the lack of a cap on federal contributions to Medicaid, makes Medicaid spending relatively unpredictable, but doesn’t respond to rising costs and needs.

Originally, the AHCA would change this by calculating a “per capita” block grant: a set amount is determined for each household on Medicaid to spend in a year (with some variation allotted for variables like age and ability status), and states receive their Medicaid funding based on the number of households enrolled in the program. This stabilizes the costs to the federal government, but grants greater flexibility to the states — although the amount of Medicaid given to the states relies on a per-capita calculation, the actual dissemination of the money is up to the state. As of this week, however, AHCA has shifted the proposal to a “simple block grant,” one that does not take enrollment into account. This gives even more flexibility to the states in their Medicaid administration, but further distances Medicaid funding from need or costs.

Herein lies the potential danger for people with disabilities: for many, Medicaid doesn’t just cover treatment (whether for acute or chronic illness), it supports essential structures that help people with disabilities live relatively independent, fulfilling lives. Medicaid covers supported living arrangements for people with intellectual and developmental disabilities (IDD); it can also cover personal assistants for people with significant mobility impairments. Medicaid waivers cover vocational rehabilitation and respite care for families. “Healthcare” is not simply about medicines and doctors; increasingly, healthcare is about a total ecosystem that can enable and empower people with disabilities.

It’s possible that the new AHCA will preserve from protections for people with disabilities — Paul Ryan has said that he would include a requirement that states continue to cover “mandatory services”: but that list is narrow, and really only means that people in full-time nursing care are guaranteed those protections. Meanwhile, states could decide to restrict or deny coverage for a range of optional services, such as: occupational therapies, private nursing, prosthetics, and — extremely critical for people with disabilities — any range of “home and community based services” (HCBS). At the moment, the HCBS waiver is a critical source of funding for people with disabilities and their service providers, supporting educational, behavioral, and vocational services. These kinds of services are expensive, and require a lot of infrastructure and, frankly, human labor. Caps on spending in these areas, or restrictions on eligibility and enrollment, would raise huge issues for people with disabilities and their families.

And this is why the AHCA, as it stands, also endangers healthcare workers, particularly the ones who do the day-to-day labor that supports people with disabilities, like CNAs or personal care assistants. These kinds of front-line healthcare workers are often earning minimum wage, or just above it; they themselves tend to live in low-income households. Their wages are partially determined by the rate of reimbursement that Medicaid offers for the services they provide; and they are doubly endangered by the fact that they may also rely on Medicaid programs for themselves and loved ones.

The vulnerability of people with disabilities is interwoven with the vulnerabilities of the support professionals who surround them. Moral philosopher Eva Kittay has written extensively about these relationships: people with disabilities often rely on “dependency work” — work that looks like the work of nurturing, but done as paid labor. The people who do dependency work themselves are often in economically fragile positions, which Kittay refers to as “secondary dependency.” Dependency work is highly gendered and racialized, often done for an hourly wage not much above the minimum wage. This all shapes and contributes to their secondary dependency, and the social vulnerabilities healthcare workers face.

In light of the dependencies and secondary dependencies embedded within the healthcare system, there are two major points I would like to make: first, that looking at “healthcare” requires moving between both macro-level issues like policy and access, and micro-level issues, like the interactions between healthcare workers of all kinds and their charges. The issues concerning the Medicaid block grants operate on the macro-level, but have real micro-level impact. This brings me to my second point, that interventions in healthcare policy often overlook the “first responders,” that is, the dependency workers that do the day-to-day grunt work: from CNAs, to medical assistants, to direct support staff of supervised living situations. Making sure men and women who do dependency work are given a fair wages and strong social welfare benefits isn’t just about their human flourishing — it is because the dependency work they do enables the agency of others. They will only serve their charges well if they have adequate professional development, security, and social supports for a job that is often emotionally overwhelming and physically exhausting. The role these workers play is indispensable, but remains underpaid and disregarded.

The reality that is so clear for people with disabilities — that human flourishing is reliant on a network of interdependent relationships — is a trend that can be seen throughout healthcare practices as a whole. Everything that I’ve been describing illustrates that healthcare is not just what happens in a doctor’s office: it is about the relationships and supports necessary for a life of human flourishing. We need to recognize this now, more than ever, as we face a hard national conversation about the future of healthcare in the country.

Lorraine Cuddeback is a PhD candidate in moral theology at the University of Notre Dame. Her research is in social ethics, particularly disability and theology, Catholic social teaching, and feminist ethics. Her dissertation is about ethics, practices, and theologies of inclusion for people with intellectual and developmental disabilities.

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