Caring for Patients with Disabilities by Jennifer L. Gibson

As a health care professional, I have interacted with patients of all ages, stages, and abilities. Most of what I learned during my formal education, however, focused on relatively healthy adults. I quickly learned, once I entered practice, that the one-size-fits-almost-all approach to my training did not apply to the real world. Only because of a lifetime of personal experiences with children and adults with disabilities did I have any framework for caring for patients that had anything other than typical medical needs. One “size” definitely does not fit all when it comes to professionalism and caring for patients – all patients – and I wonder where medical training and education can improve to provide the best possible care to patients and most effective support to caregivers.

Families of individuals with disabilities require emotional, informational, and practical support. Parents, especially, want health care professionals to listen to them, educate them, acknowledge their experiences and emotions, and direct them towards resources that can assist them. How and when this support is provided affects service utilization, facilitates understanding of care-giving roles, and addresses feelings of stigma and isolation.

Are health care providers as accessible and supportive as we can be? Of course, there are legal obligations for allowing physical access to medical offices and facilities, but are health care personnel equipped to accommodate the emotional and social well-being of patients and their families? Barriers to proper health care include insufficient time with the health care provider or staff, unclear or incomplete communication between provider and patient and caregivers, and inadequate provider knowledge of disabling conditions.

Overall, patients with disabilities have higher risks of many chronic health conditions, but they receive fewer preventive services and are in poorer health than individuals without disabilities. Children, youth, and adults with disabilities experience disparities in many key indicators of health, and the problem will continue to get worse without access to proper care (and care providers).

Health care providers have responsibilities to understand the laws and regulations that protect and help people with disabilities, identify proper equipment and services, and recognize and mitigate barriers to care and support – not only for the patient, but also for the family and caregivers. Many health care providers, though, have their own barriers to providing care to people with disabilities, including physical barriers (e.g., offices and equipment that cannot accommodate physical, cognitive, or sensory needs), attitudinal barriers (e.g., additional time spent with patients is viewed as a burden), expertise-related barriers (e.g., not having sufficient training or education with complex needs associated with some disabilities), and systemic barriers (e.g., inconsistent and maldistribution of health care services and resources). These barriers can prevent patients from receiving care, not just delay or inconvenience it.

Unfortunately, negative attitudes of health care providers toward patients with disabilities mirror the attitudes of the general public, which deter care and create obstacles for people with disabilities. Health care providers also tend to view a disability as an “illness” – an acute condition that requires a curative response. This view perpetuates the disempowerment of people who are already facing more challenges than average people.

Health care professionals need to recognize the educational opportunities that patients with disabilities can offer. In addition to specific issues or conditions that require medical attention, treating people with disabilities also offers chances to review assumptions made by the professional about overall health and wellness for all patients. New, longitudinal curriculum is needed to teach students in health care education to care for people with disabilities and their families. Training should be coordinated among communities and health care settings and should comprise input and experiences from current professionals, as well as patients with disabilities and their family members. All health care professionals should enter practice with the expertise, consideration, and compassion – and passion – for providing equitable, accessible, quality care for all patients.

Jennifer Gibson is a pharmacist and medical communicator. Dr. Gibson trained as a hospital pharmacist specializing in internal medicine and acute care, and, in this role, helped to implement patient safety initiatives and investigate medication errors and adverse drug reactions in hospital settings. She evaluates and consults on clinical performance and risk reduction in the health care industry and in other high-reliability organizations, and she regularly presents medication and patient safety education and training sessions for health care professionals, as well as parents, children, and caregivers. Find out more about Dr. Gibson at ExcaliburScientific.com.