Diversity, Equity and Inclusion (DEI)
Henry J. Kotlinski, II, DO
Resident Physician
Ascension St. Vincent
Zionsville, Indiana, United States
Whitney Pratt, MD, PhD
Assistant Professor
Indiana University
Indianapolis, Indiana, United States
Henry J. Kotlinski, II, DO
Ascension St. Vincent Hospital - Indianapolis
Zionsville, Indiana, United States
Quadriplegia and ventilator dependence secondary to a C5 spinal cord injury
Case Description:
A 17-year-old female from the Amish community presented with a C5 spinal cord injury, resulting in quadriplegia and ventilator dependence. Her family declined to obtain insurance coverage, including Medicaid, and had a goal of discharging home, which had no electricity. The medical team expressed concern about the family’s willingness to accept medical technology, including ventilator, tracheostomy, feeding tube, and power wheelchair, and about their ability to manage the patient’s care at home. However, after consultation with their council, the patient was approved to obtain any necessary equipment to provide her care at home. Ultimately, the community built an annex to the family home with electricity to power her equipment. Funds to cover costs were crowdsourced from Amish communities nationwide. The patient and family successfully completed all training at the acute care hospital, enabling direct discharge to home. This culturally sensitive, community-supported approach allowed optimal care and exceeded functional expectations.
Discussions:
Limited medical literature addresses rehabilitation needs of patients from the Amish community. The Amish community relies on mutual aid, avoids government-sponsored programs, and typically lacks traditional medical insurance, instead funding care through community support. Extensive family and community ties provide social, emotional, and material support, favoring home-based care, with technology limits and community leaders often guiding medical decisions. Medical technology may be accepted as essential care, though practices vary among communities. In this case, while the family was dedicated to the patient’s needs, a community-based model was essential for care and cost. Meeting patients and families within their cultural framework supports decision-making and fosters cultural competency.
Conclusions:
With a culturally sensitive approach to care, complex medical needs of patients in the Amish community can be met despite perceived barriers. Close collaboration with patients, families, and communities is essential for successful outcomes.
