LAWRENCE — While nurses generally have adequate training to attend to the immediate health needs of people with physical, mental and psychological disabilities, some may share with the general public misconceptions about people with disabilities. A new course offered at the University of Kansas School of Nursing aims to change that.
"The point is to educate nurses about what people with disabilities want them to know about their own health care," said Jamie Simpson, KU's director of accessibility and ADA education. "It's not just their disability that they want to focus on — they want to be treated as a whole person, someone living in the community, someone with goals and needs. As just one example, they might want a family. Before, that wasn't always apparent. Doctors and nurses might assume that someone in a wheelchair doesn't want to have kids. And that assumption affects their health care because they might not recommend a certain screening. Or they might assume wrongly that the person should get a hysterectomy, without even asking them if they want kids."
Simpson, who has been in her current position since March, previously served as disability coordinator with the Kansas Department of Health and Environment. Before that, she worked at KU's Research & Training Center on Independent Living. In all three roles, she has strived to develop and implement a course for health care workers who attend to people living with disabilities. The "Caring for People with Disabilities" course is the result of that work.
"My biggest contribution was probably coordinating the collaboration so that both experts in the field of disability and people with disabilities could teach nursing students the knowledge, skills and resources to increase the quality of care for their patients with disabilities," Simpson said. "I also ensured public health discussions on disability topics such as epidemiology."
Additionally, Simpson had a hand in teaching and grading students. The other faculty members who created and taught the course were Heather Smith, health-planning consultant at the KDHE, and Moya Peterson, clinical assistant professor at the KU School of Nursing.
"Caring for People with Disabilities" was offered online to nursing students for the first time in spring 2012. Coursework combined reading, video interviews featuring people living with physical, mental and psychological disabilities, journal keeping and field trips to health care facilities to determine accessibility, among other lessons.
"Nurses have been very good about treating the whole person," said Simpson. "But one of the major takeaways we wanted to emphasize is that there are unique circumstances in treating people with disabilities. While people with disabilities can be healthy, how they achieve and maintain health might look different than patients without disabilities. Also, Kansas data indicates that there are numerous health and social disparities between people with and without disabilities. When someone with a disability comes to their office, health care practitioners may need to consider socioeconomic facets, the lack of transportation and food insecurity issues that could impact a patients' prescription plan or treatment plan. It's hard to know about those outside factors without knowing what they are."
Having interviewed scores of people living with disabilities, Simpson cited their real-life experiences as a chief motivation for creating the course.
"Yes, Kansas with disabilities are saying, 'My doctors and their staffs are not treating me fairly, and it's because of my disability,'" said Simpson.
She also cited a 2009 report from the National Council on Disabilities that stated: "The absence of professional training on disability competency issues for health care practitioners is one of the most significant barriers preventing people with disabilities from receiving appropriate and effective health care."
The development of the course was funded by the Centers for Disease Control and Prevention and an "Integrated Community Systems for Youth with Special Health Care Needs" grant from the Health Resources Services Administration within the U.S. Department of Health and Human Services.
Further, Simpson credited other KU disability experts for providing time, insight and class presentations to the students, including Dot Nary, Cat Howland, Martha Hodgesmith, Amanda Reichard, Jean Hall, Wendy Parent and Teri Lavenbarg, nurse practitioner at the KU Medical Center.