Hersher Institute: Module on Ethical Reasoning in Developmental Disabilities

Ethical Reasoning in Developmental Disorders

A case based resource module.

This module was developed under the auspices of SHU’s Presidential Seminar, provided by the Office of Mission and Catholic Identity under the direction of Dr. Michael Higgins to give faculty volunteers an immersion experience in the Catholic Intellectual Tradition. This module was created as an inter-professional project for the Seminar by Sharon McCloskey, OTR/L and Rhea Paul, CCC-SLP. We believe that the module addresses principles we have studied within the Catholic Intellectual Tradition as part of our participation in the Seminar, including:

  • The belief that every human life has meaning, regardless of how different from “normal” that individual may be; the principle of Universality teaches us that all human beings and all peoples and nations are precious and unique. As health professionals we have the moral obligation to provide the greatest degree of autonomy, satisfaction, and fulfillment to every individual regardless of disabilities, limitations, or differences;
  • A deep commitment to the continuity of faith and reason; that scientific advances do not compete with faith-based principles; as health professionals, we strive to provide access to the most advanced scientific approaches to health, disease, and disability to every family affected by disability, but at the same time to support families in making choices about approaches to the issues they face within the context of their faith tradition;
  • An understanding of practices that reflect the community dimension of all human actions, of the need of every individual to feel part of the human family, to communicate thoughts and feelings freely and fully, to participate in social, vocational, and recreational communities, and to be recognized as a contributing member of society. As health professionals within the Catholic Intellectual Tradition, we appreciate our duty to facilitate this community integration for every individual, regardless of abilities/disabilities, to decrease isolation, silence, and marginalization, and to provide supports for participation and communication in all aspects of human society.

The module is designed to support clinical educators in bringing ethical discussions into case-based presentations with students in healthcare and rehabilitation professional training. The module contains the following sections:

Introduction to Ethical Reasoning (Intro): a general introduction to ways of thinking about ethical issues in the care of children with developmental disabilities and their families. It includes a definition of ethics, a discussion of basic ethical principles, rubrics to use in evaluating ethical discourse, and additional resources for further study.

Newborn Intensive Care Unit Case (NICU): This case presents the dilemmas facing parents and providers in the care of very fragile newborns. Both the clinical and ethical issues are presented. Parents’ responses to their experience with these dilemmas will be presented, as well information on clinical procedures and collaborations in the Newborn Intensive Care Unit (NICU).

Transition to Kindergarten Case (Ktg.): This case is based on a five year old boy with severe autism whose family and school is faced with deciding how to provide services for him now that he needs to transition from preschool to kindergarten. Ethical issues around the various treatment approaches available for severe developmental disabilities, as well as case material on his educational needs will be presented.

Transition to Young Adulthood (YA): This case discusses the issues that face families of those with disabilities when students transition from school to the community setting.

Ashley X Case (Ashley X): This case regarding parents’ decision about their “pillow angel,” a child with profound disabilities, and raises many questions about the ethics of treatment and the conflicting interests and rights of those involved in these most difficulty decisions.

Resources: This section will lead you to additional readings and resources to consider in deepening students’ thinking about the many ethical issues involved in working with disabilities. We also provide the thinking of some “moral mentors” who talk about their own struggles and resolutions with ethical dilemmas they encountered in their practice. Additional resources to support teaching in this area are provided in the “For Instructors” section.

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