Health and Well-Being in Amish Society
Session 1
Thursday, June 6, 2019 • 3:30–5:00 pm
A. Seminar: An Introduction to Amish and Plain Anabaptist Groups
Edsel Burdge Jr., MA
This seminar will provide an overview of Amish, Mennonite, and Brethren Plain groups, including Old Order horse-and-buggy-driving groups and the wider variety of conservative car-driving churches within the Plain Anabaptist orbit. Participants will learn the basic culture and values that animate these groups, as well as their geographic concentrations and spread across the United States and Canada. Emphasis will be placed on understanding the diversity as well as identifying the commonalities among the groups, with an eye to questions and issues that commonly arise for health care providers, such as community and family decision-making, use/non-use of insurance, and broad understandings of health and scientific medicine.
Edsel Burdge Jr. is research associate at the Young Center for Anabaptist and Pietist Studies. He gathers the statistical data for the Center’s annual Amish Population Profile. His research interests focus on American Mennonites within the Swiss Brethren tradition, and he coauthored Building on the Gospel Foundation: Mennonites of Franklin County, Pennsylvania and Washington County, Maryland, 1730-1970 (2004). Burdge received his MA in history from Villanova University and belongs to a Plain, car-driving Mennonite church.
B. Seminar: One Community’s Effort to Control Genetic Disease
Vincent Carson, MD
Erik Puffenberger, Ph.D.
Adam Heaps, M.S., MBA
The Clinic for Special Children opened in 1989 to provide care for uninsured Amish and Mennonite children with genetic disorders. Over the past 30 years, the clinic has used publicly available molecular data and sophisticated technologies to improve diagnostic efficiency, control laboratory costs, reduce hospitalizations, and prevent major neurological impairments within a rural underserved community. These actions allowed the clinic to save local communities an estimated tens of millions of dollars in aggregate medical costs. This exposes an unsettling fact: our failure to improve the lot of most people stricken with genetic disease is no longer a matter of scientific ignorance or prohibitive costs but of choices we make about how to implement existing knowledge and resources.
Vincent Carson earned his medical degree from Drexel University in 2011 and completed his pediatric and child neurology training at the Children’s Hospital of Pittsburgh
. As a neurologist, he specializes in disorders of the brain, spinal cord, nerves, and muscles, and he has a special interest in the genetics of brain disease. Carson joined the staff of the clinic in 2016, where he provides care for patients,reads EEGs, and participates in research protocols.
Erik Puffenberger earned his Ph.D. in human genetics from Case Western Reserve University in 1996. He joined the staff of the Clinic for Special Children in January 1998, and became laboratory director in 2000. Puffenberger’s work involves implementation of molecular techniques for routine diagnosis, research into the genetics of isolated populations, development of molecular strategies for newborn screening, and identification of novel disease genes by genetic mapping and exome sequencing.
Adam Heaps is the clinic’s executive director. In that role, he is responsible for financial management, strategic planning, collaborative relationships, facilities, and human resources. He holds an M.S. in biology from Millersville University and an MBA from Saint Joseph’s University. Heaps joined the clinic in 2010 as a laboratory technician and was promoted to laboratory scientist in 2012, a position he continues to hold in addition to his other responsibilities.
C. Papers: Conflict and Cooperation in Addressing Health and Safety
Negotiating with Modern Medicine: Insights from Amish Burn and Wound Care (B&W)
Mark L. Louden, Ph.D.
In this presentation, I will focus on how a natural method of treating burns and severe wounds known as B&W (“burns and wounds”) is an apt example of how Plain people chart a middle course between traditional and allopathic forms of medical care.
B&W, developed in the 1980s by an Amish man, John Keim, involves the use of a honey-based salve and scalded burdock leaves for wound care. B&W caregivers are trained in the method and form a network that includes regional and national meetings in Plain communities. As B&W is not federally approved, its use in hospitals and other care facilities is limited; however, awareness of it among burn specialists in the medical community is growing.
The popularity of B&W in Amish and Mennonite communities has led in some instances to conflicts between Plain people and physicians, usually when minors are involved. Specifically, many Plain parents are reluctant to have their injured children treated in facilities that will not permit B&W. For their part, burn specialists in hospitals are often concerned that Plain children may not receive a minimum standard of care. Physicians’ concerns are amplified by the fact that the most common form of physical abuse of children in the US involves burns (especially scalding).
Drawing on my experience as a consultant to a Wisconsin-based committee of B&W-minded Amish, I will outline some of the ways that disagreements regarding B&W emerge and how they are addressed. I will also briefly discuss the similarity of B&W-related conflicts to historical disputes between Amish and outsiders in the area of education, where again the question of what is best for children was in focus.
Mark L. Louden is a fluent speaker of Pennsylvania Dutch and has written extensively on the language and its speakers. He is the author of Pennsylvania Dutch: The Story of an American Language. Louden is the Alfred L. Shoemaker, J. William Frey, and Don Yoder Professor of Germanic Linguistics at the University of Wisconsin–Madison, directs the Max Kade Institute for German-American Studies, and is an affiliate faculty member in the UW Religious Studies Program.
When the “World’s” Law and Ethics Clash with Amish Religious Freedom: An Exploration, Using Medical Case Studies, of the Nature and Significance of this Tension
Frédérique Green, BA
In recent years, Amish faith and tradition have sometimes collided with regulations/directions from the state regarding medical ethics. This topic has emerged since medical technology and medication have dramatically increased in the twentieth and twenty-first centuries, leading to ethical debates.
This presentation will analyze the nature and significance of the dilemmas encountered by both the state and the Amish communities in this particular area. It will raise questions about finding the balance between religious freedom and the state’s interest in health issues. The study will be illustrated by several medical cases involving Amish people, including these:
a) Kentucky: Amish herbal-remedies (Samuel Girod, 2017-2018)
b) New York: baby with heart defect (Eli Hershberger, 2008)
c) Ohio: cancer patient (Sarah Hershberger, 2013-2015)
d) Pennsylvania: lay midwives attending to mothers from Plain communities (Lucille Sykes, 1989-1990; Diane Goslin, 2007-2008)
e) Indiana: Amish midwives (Sylvia C. Eicher and Lydiann S. Schwartz, 2018)
I will argue that religious freedom is under growing pressure from the state’s increasing safeguarding legislation in areas of health, medical practice, and health products in parallel with continual medical/technical progress.
This presentation will conclude by characterizing the Amish response to increasing state intervention.
Frédérique Green is conducting research for her Ph.D. at the University of Birmingham in the UK. The title of her project is “An Analysis of the Dialogical Exchange between the American Politico-Legal System and the Amish.”
A Community Saves Children’s Lives: Making Reflective Safety Vests
Kay Moyer, RN, BSN, MPH
Amish and Mennonite children walk or ride on the roads to/from school, their neighbors’ and friends’ homes, and the store. Today, many more vehicles travel the roads than 10 to 20 years ago and they travel at faster speeds. Walking and riding along the road is dangerous, especially when it’s cloudy, rainy, snowy, or dark or when there is sun glare.
The safety vest project began in 2011, when parents wondered if their children could walk to their new Amish school on the more open right side of the road rather than on the left side, which had no berm. The smallest reflective safety vests sold in local stores were too large for young children.
It was difficult to find fluorescent vest material and more difficult to find discounted reflective tape. We kept searching until ORADOL Americas, in Connecticut, signed on to the project and donated all the reflective tape. Private donations from individuals and agencies are used to purchase edging, elastic, Velcro, and fabric in bulk.
Because our small vests (which fit first, second, and third graders) were too small for dwarf children, we began making an extra-small vest. That size also fits 2- and 3-year-olds, so they can wear them in the driveway, increasing their visibility to trucks and cars.
Volunteers cut and finish the vests—it’s a community-wide grassroots effort. Approximately 27,000 vests have been given to children since 2011.
We can’t increase the width of the road berm or decrease the size and speed of the many vehicles that travel the roads, but we can increase a child’s visibility.
Kay Moyer is an extension educator for the Lancaster Penn State Cooperative Extension. She provides farm and home safety education including chemical and pesticide safety in Amish and Mennonite schools, each year reaching more than 23,000 students and over 1,000 families with safety information. Moyer also provides safety education for home school groups and teaches at several Farm Safety Day trainings each year.
D. Workshop: Minimizing Barriers to Care
Joanne Eshelman, M.S., IMC
Cynthia Heisey, BSBA
Lydia Nolt
MaryAnn Robins, BS, MT (ASCP)
This workshop and discussion will address some of the barriers that at times stand between members of the Plain Community and medical care, including questions of cost, insurance issues, transportation, navigating medical bureaucracy, and communicating diagnoses and care plans to patients with limited education in science. There can also be language barriers and misunderstanding of medical terms. Health care providers who serve this population need to be sensitive to patients’ preferences and use of complementary medicine, and natural approaches before, during or after seeking treatment. Providers may also be puzzled by some patients’ willingness to travel great distances for care, when cost-effective, quality care is available closer to home. Over the past 15-20 years, a southcentral Pennsylvania health system has focused on removing barriers to care for Plain Community families, reducing out-of-pocket expenses for these patients and providing personalized support as needed. Through this work, the team has learned a lot about what the Plain Community considers when choosing providers, what their greatest needs are and how a large health system can meet those needs while taking care of the population at large. Panel members will share experiences and best practices. Audience members will be invited to share their questions and experiences.
Joanne Eshelman is director of Plain Community Relationships for WellSpan Health, leading the health system’s work in improving access to care for Plain Community patients across the eight hospitals and 170 additional patient care locations. Eshelman served as director of community relations and marketing for Ephrata Community Hospital before assuming this role with WellSpan Health in 2013. She holds an undergraduate degree from Elizabethtown College and a graduate degree from West Virginia University.
Cindy Heisey is Plain Community Program Coordinator with WellSpan. Growing up in a conservative Church of the Brethren family and later teaching in a one-room Amish school, Heisey’s life experiences help her build relationships within the Plain Community. She has worked in a variety of health care settings since 1987 and holds a bachelor’s degree from Eastern University. Making good education available to patients, and the staff members caring for them, is one of her objectives.
Lydia Nolt is Plain Community Liaison for WellSpan Ephrata Community Hospital. As a member of the Plain Community, Nolt helps Plain Community people understand health care choices, discounts, payment options, and billing. She also helps the hospital staff understand the Plain Community culture, their way of reasoning and thought patterns, and what is acceptable and unacceptable within this culture. Additionally, Nolt is a certified medical interpreter for those who speak Pennsylvania Dutch.
MaryAnn Robins is Plain Community Program Coordinator with WellSpan. A graduate of Boston College, she has worked at hospitals in Boston and Lancaster as a medical technologist. Robins’ understanding of the Plain Community grew out of her work with a local midwife, and she brings extensive knowledge of the way the community pays for care, their attitudes towards non-traditional medicine, and the importance of the family and greater community to the individual’s well-being.