Adaptive Care Planning for Patients with Developmental Disabilities: A Novel Approach

Abstract: Individuals with developmental disabilities face significant disparities in healthcare including bias, ableism, and communication challenges while experiencing higher-than-average levels of medical complexity. Medical professionals are frequently under-resourced and overwhelmed in the care of this population due to a variety of factors including a paucity of relevant medical education and the lack of a defined approach to care. The disability paradox adds a further layer of discomfiture to the medical decision-making process. The cumulative result of these challenges is the provision of unintentionally inequitable care to patients with developmental disabilities.

Our ethics consultation service has evolved as a resource for issues of consent, surrogate decision-making, and capacity while creating a framework to advocate for the dignity and unique needs of each patient. Adaptive Care Planning (ACP) is our novel, patient-focused, multidisciplinary process to care for individuals with exceptional needs facing serious illness. This approach utilizes the patient’s values, preferences, and support needs as a foundation for compassionate, intentional, and ethically appropriate goal-concordant care. Adaptive Care Planning addresses moral distress and increases equitable access to dignity-centered care for exceptional patients.

Our workshop will illustrate the application of Adaptive Care Planning through the care of a patient with significant developmental disabilities who formerly resided at Willowbrook State School. We will provide a structured ethical analysis framework, introduce tools that facilitate optimal communication, and model implementation strategies for Adaptive Care Planning.

Keywords: disability, inequity, adaptive