# Expert Conversations: Cecily L. Betz

WITH Foundation is pleased to present Expert Conversations, an ongoing series that features conversations with experts in the fields of healthcare, disability, digital health, and philanthropy.

Today’s Expert Conversation is with Cecily. Betz, PhD, RN, FAAN, the Professor of Clinical Pediatrics at the USC Keck School of Medicine, Department of Pediatrics.

Cecily serves as the Nursing Director and Research Director of the USC University Center of Excellence in Developmental Disabilities at Children’s Hospital Los Angeles. She is the Co-Chair of the International and Interdisciplinary Health Care Transition Research Consortium. She is the Founder and Editor-in-Chief of the Journal of Pediatric Nursing: Nursing Care of Children and Families (JPN) which is the official journal of the Society of Pediatric Nurses and the Pediatric Endocrinology Nursing Society. She has contributed to over 275 publications in the field of pediatric nursing and long-term care of children and youth with special healthcare needs and disabilities. She is the editor of fifteen pediatric nursing textbooks that have been used extensively in pediatric nursing undergraduate and graduate programs and in healthcare settings, which have been translated into several languages. Dr. Betz serves on numerous professional advisory boards at state and national levels. In 2018, she received the Barbara A. Larson Humanitarian Award from the Society of Pediatric Nursing for her service and contribution to pediatric nursing.

It’s and honor to talk with you, Cecily. Tell us more about your background. What led you to specialize in IDD Nursing?

It was an interesting journey as I began as a nursing clinician at Children’s Hospital Los Angeles (CHLA) working with children, youth and young adults with special healthcare needs and IDD. For a portion of my initial practice years at CHLA, I was in the Rehabilitation Center and valued that experience in ways that were very different from the inpatient units. Although for a portion of time, I was a manager of a step down ICU, I was drawn to working with children, youth and young adults with long-term conditions. 

Eventually, I went to UCLA as a nursing faculty member, and while there learned about the opening at the UCLA University Affiliated Program (UAP; now known as University Centers for Excellence in Developmental Disabilities Education, Research and Service, UCEDD) wherein I served as the Associate Director and Nursing Training Coordinator. I was at UCLA UAP for 13 years before coming back to USC UCEDD at CHLA, where I have been for almost 25 years serving as the Nursing Training Director and Core Function Director for Research. 

What are some differences in the nursing experience of someone who specializes in the care of individuals with IDD?

There are significant differences associated with the scope of practice in IDD nursing. First of all, nurses who specialize in IDD are generally employed in community-based settings or outpatient settings of healthcare facilities. Unlike other specializations that are typically age-dependent, nurses who specialize in IDD nursing have opportunities to focus on a particular age range such as children, youth and young adults and/or those along the continuum of adulthood. Nurses who specialize in IDD nursing are typically involved with providing care coordination and referral services. The recently published American Nurses Association publication, Intellectual and Developmental Disabilities Nursing: Scope and Standards of Practice, 3rd Ed. summarizes the essence of IDD nursing:

“Nurses who practice in the specialty field of IDD have clinical expertise and experience pertaining to the illness–health continuum of care of individuals across the life course whose conditions meet the diagnostic criteria identified in the Developmental Disabilities Assistance and Bill of Rights Act of 2000 (Box 1). IDD nursing practice is based upon a family centered and, in later years, an individual-centered philosophy of care wherein the family (and when appropriate, the individual) are considered full partners in the development of the comprehensive plan of care. IDD nursing is comprehensive in scope and is focused on all aspects of the biopsychosocial needs of the person with IDD, their family, and their community, as well as the resources that are available to the person, family, and community.” (ANA, p.2) 

American Nurses Association (2022) Intellectual and Developmental Disabilities Nursing: Scope and Standards of Practice, 3rd Ed. Silver Spring, MD: ANA

 

From your perspective, what is the state of the IDD Nursing Practice?  I.e., are there enough nursing professionals to meet the demand, etc.?

Actually, nurse leaders in IDD nursing are very concerned about the state of IDD Nursing Practice. We recently conducted a survey of the current involvement of nurses in University Centers for Excellence in Developmental Disabilities Education, Research, and Services (UCEDDs) and Leadership Education in Neurodevelopmental and Related Disabilities (LEND) networks. ( To learn more about these networks, visit: aucd.org).

 As a result of the survey, we found that of the 60 UCEDDs, just 27 (18%) have nurses as core team members. In the LEND network, of the training programs, just 27 (45%) have nurses and faculty members.

Quite literally, nurses in these federally funded networks are disappearing. This is an alarming trend as these networks serve as the primary source for educating nurses in the specialty field of IDD nursing. Additionally, there are significant concerns about the lack of attention/focus in nursing curriculums on population needs and issues pertaining to individuals with disabilities, including individuals with IDD.

Recently, we have convened a group of nurse leaders from several UCEDDs and LEND programs to strategically plan a long-term approach to addressing this issue. Ideally, we would envision a national focus/resource for IDD nursing that addresses the widespread healthcare needs and issues of individuals with IDD. There are so many intersecting issues associated with this envisioning, including the potential changes that are occurring nationwide with the passage of Full Practice Authority for nurse practitioners. This legislation, as passed in each state, will enable nurse practitioners to practice independently. We believe this can and will have significant implications for community-based health services for the underserved population of individuals with IDD. This is a helpful website to better understand the service model of full practice authority.

https://www.aanp.org/advocacy/advocacy-resource/policy-briefs/issues-full-practice-brief

Currently, this group of IDD nurse leaders are working on a Call to Action paper that we hope to publish in a major nursing journal to call attention to the diminishing numbers of IDD nurses. We intend to follow up this initial effort with several other publications and advocacy efforts at the state and national levels.  

What is your favorite part of the work you do?

Obviously, working with children, youth and young adults with IDD and their families. My area of specialty practice and research is healthcare transition planning. Anything associated with this area of practice and research inspires me greatly. 

What are some things you would like healthcare funders to better understand about the work you do?

There is great need for investment in the work of IDD nurses. This group of healthcare professionals provide services and consultation, as well as advocate and conduct research where individuals with IDD and their families live, work and play. IDD nurses are involved with the development and implementation of family-centered and individual-centered services and programs to improve the quality of life for individuals with IDD. Many important concepts of care originated in nursing that include care coordination, family-centered care, and child-centered care.

Thank you Cecily!

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