A Different View of Health Advocacy in Amish Country
H
ealth advocacy is defined as “Activities related to ensuring access to care, navigating the system, mobilizing resources, addressing health inequities, influencing health policy and creating system change” (Hubinette, Dobson, Scott, & Sherbino, 2017, p. 128). As a nurse, working in a health system of expensive marketbased specialized care, care centers primarily located in urban centers far from rural agricultural communities, and health care providers who receive little education and support in working with unique cultural groups, I believe in health advocacy as a core of my profession (American Nurses Association, 2020). Improving access to quality care to those who are left behind in this health system is one of my passions. I work as a nurse at the Decorah Free Clinic and annual University of Iowa outreach clinics for Amish families with hemophilia. Both charitable endeavors ask nothing of participants except to come, which represents one model of health advocacy to bring health care to marginalized populations. Sabbatical allowed me to see a new side of health advocacy that I had not explored before. This article will explore a model of joined health advocacy between providers and community partners that creates potentially more sustainable and empowering health care resources than I have engaged in the past. I will also describe the experiences of several Amish families with genetic illnesses who benefit from access to these resources. During my Scholar in Residence fellowship at the Young Center for Anabaptist and Pietist Studies (2020) in Elizabethtown, Pennsylvania in the fall of 2019, I came to deeper understanding of a vast innovative network of health options for Plain Population families. Plain Population is a term that represents religious group members of Anabaptist origins,
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such as Amish and Mennonite. Due to the high Plain Population size in Pennsylvania, several health care resources provide primary care, mental health care, and hospital payment plans (Amish America, 2015; Goldsmith, Porter, & Royce, 2019; Yohn, 2018). I was specifically focused on learning more about care for families with genetic illnesses because Angela Kueny at her desk in the Young Center at Elizabethof my past work with families with hemophilia town College in Pennsylvania in Iowa. Plain Populaurine disease, or familial hypertropic tions experience a heightened risk for cardiomyopathy (The Change Foundagenetic illnesses because of historition, 2006); all of these highly complical practices of marrying within their cated illnesses with costly treatments tight-knit religious groups, large family require consultation with specialized gesizes, and founder genetic illnesses neticists. In Dr. Morton’s words (2012), within members (Strauss, Puffenberg, “If in our society we have prejudices and & Morton, 2012). In a community that business practices that in effect deny does not subscribe to public or private children with genetic diseases access to health insurance and lives remotely to medical care, then we should change any genetic specialist (Kraybill, Johnsonthose practices and prejudices.” But, I Weiner, & Nolt, 2013), a significant wonder, what do Plain families with challenge is to make the connection genetic illnesses need in their health between these families and life saving care services? And, who is responsible health care. for making these services available? In Extensive time with Dr. Holmes Morton, the physician who founded the Clinic for Special Children in 1989 in Strasburg, PA and now the Central Pennsylvania Clinic (2019), allowed me to see the operation of a network of clinics to address the health care needs of Plain families with genetic illnesses. On one of our first drives through a valley in the Pennsylvania mountains, housing several conservative Amish and Mennonite sects, Dr. Holmes Morton pointed to each home, listing off the genetic illnesss found within such as: phenylkentonuria, propionic acidemia, pyruvate kinase deficiency, maple syrup
essence, how does one advocate for this unique and remote population?
Joined health advocacy, in this case, would ask and partner with the Plain families to understand their needs and then house the responsibility of the needed care within the Plain Population members. Dr. Morton’s two clinics, in partnership with six other clinics across the country in states such as Ohio, Indiana, Kentucky, and Wisconsin, provide care in the heart of Plain communities to families with genetic illnesses with this model (Plain Community Health Consortium, 2020). These non-profit clinics are literally built by the Plain
IMAGE COURTESY OF THE AUTHOR
by ANGELA KUENY, Associate Professor of Nursing
