Diversity Fellow Project, Louvisia “Lou” Conley

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Amendment of the American Nursing Association’s, (ANA) Intellectual and Developmental Disabilities: Scope and Standards of Practices

Diagnostic Overshadowing [download]

meet Louvisia “Lou” Conley >

Project Narrative

1. Please describe your activities during your fellowship experience. Describe your final capstone project(s).
My area of focus during my Diversity Fellowship experience has been part of evidence-based practice in working with family support groups and deaf education. I also worked with Nursing Faculty in a workgroup of nurses around the country in revising the American Nursing Association's (ANA), The Nursing: Scope and Standards of Practices on Intellectual and Developmental Disabilities (I/DD). I contributed my expertise in disability as a consumer on the appropriateness of the revision content from a disability expert standpoint. The timeline for this project involved a two-year commitment, which included two reviews: one review after an initial draft of the revision of the 2nd edition of the book had been generating and the second review as the 3rd edition of the book as it becomes closer to completion. As a future professional educator, advocate, mentor, instructor role model, and leader, I am motivated to empower and educate others on best practices in working with individuals with intellectual and developmental disabilities. This area of focus is the foundation of who I am a person with my own “dis” ABILITY. As a role model, I am committed to educating society about its negative views of people with "dis" ABILITY in the workplace and the healthcare systems. Furthermore, I have been working on creating an evaluation tool that measures nurse’s knowledge-based information with communicating with individuals with disabilities, the perception of the individuals with disabilities, and the use of universal design learning methods for nurses’ use in healthcare. My goal is to empower others on changing society’s viewpoints with how an individual with a “dis” ABILITY labeled and view when receiving healthcare services and resources. I believe the “dis” on “ABILITY” is the wrong label to use when addressing individuals who are unique and extraordinary in their attributes’ as a human being. I want society to see the person with ABILITIES, not a "dis" ABILITY. The "dis" in ABILITY makes individuals with intellectual and developmental disability seem invisible. My life motto is “When thinking about Me., think ABILITY, not “disability.” I say, my "dis" ABILITY does not define me, I am defined by my ABILITIES, in which I can contribute." By, Ms. Louvisia "Lou" Conley

2. Who did your project inform, help, influence or impact? (UCEDD, individual, community, state) How?
The project will inform and impact the American Nurses Association (ANA), The Nursing: Scope and standard of Practices on Intellectual and Developmental Disabilities, which serves as nursing specialty organization when describing the details and complexity of that specialty practice. The Committee on Nursing Practices Standard continues to reaffirm the earlier Nursing Practice and Economic decision in the specialty nursing scope and standard and continue to be reviewed, revised and resubmitted for approval and acknowledgment at least every five years. The nurses' specialization focuses on serving patients with intellectual and developmental disabilities that extends across all practices. This project will influence nursing with the ethical understanding of the scope and methods and the importance of nurses continuation to strive and to promote the significance of the discipline of this specialty field and to provide specific health care at both the generalist and advanced practices level. Also, this project with impact and influence the utilization of the UCEDD efforts throughout the community in use for children and adults with special needs and the importance of unique health care understanding of care for individuals with intellectual and developmental disabilities.

3. Why did you choose to work on that project(s)?
As a person with an invisible disability – specifically Deaf/Hard-of-Hearing, I understand the importance of the Nursing Scope and Standards of Practices with working with patients with Intellectual and Developmental Disabilities. As a disability expert, I recognize the importance of the working professional relationship between nurses and their patients with a disability. The reason I accepted this project was to help bridge the gap between patients with intellectual, developmental disabilities, and their families in understanding the best way to communicate and navigate the modern healthcare system. In addition, I gained experience in working with nurses as an educator, advocate mentor, instructor, and leader. I had the opportunity to empower nurses to become aware of diagnostic overshadowing when administering healthcare to their patients with intellectual and developmental disabilities. As a Fellow, I wanted to impact the revision of the ANA with my insight and personal experience in the improvement of nurse’s outcome through continuing education of how to work and communicate with patients with a “dis” “ABILITIES”, their families, and how best to assist with policy changes and encourage higher standard around person-centered healthcare. Furthermore, I educated nurse faculty on an exploration of societal barriers (institutional and personal) that may prevent persons with “dis” “ABILITIES” from receiving the best resources and healthcare. By engaging in this project, it has increased my leadership skills, knowledge, and awareness of ANA, Nursing Specialty Practices where practitioners are committed to providing a continuum of services to individuals with IDD across the lifespan.

4. What did you gain from being a Diversity Fellow?
During my Fellowship with the Boling Center for Developmental Disabilities (BCDD), University of Tennessee Health Science Center, I was provided with individual shadowing experiences in clinical diagnosis, family sessions, autism observation and assessment, mentorship, and leadership involvement. I was also provided with tools that I will use in writing my dissertation for my doctoral program. One of my first opportunities within my Fellowship was assisting graduate students with their presentation on Deaf Education, and Awareness in a Brown Bag and Workshop designed to increase LEND Trainees leadership skills, awareness, innovative practices to enhance cultural competency, family-centered care and interdisciplinary partnerships in Neurodevelopmental and Related Disabilities at the Boling Center. In this setting, I was provided a unique opportunity in obtaining hands-on experience with working with Nursing Faculty, students and family support groups and mentorship of young adults groups. I shared ideas and expanded awareness about how best to communicate with individuals with disabilities in the workplace who have different ABILITIES. Furthermore, at the Boling Center, I was able to increase my competency in sharing my knowledge about disability awareness and Deaf Education and inform ways of the best communication options, reasonable accommodations, and support for persons with “dis” “ABILITIES”. I gained leadership skills as Healthcare Consumer Advocator Educator in my work with the ANA Nursing workgroup. Through this interaction, I was able to bring my expertise as a disability expert and collaborate with clinical nurses on individual's limitations with their “dis” ABILITIES” and the necessary accommodations needed. I gain exceptional interdisciplinary training and services skills that allowed me the understanding of committed to diversity and the importance of working together, therefore, enable my leadership skills to cultivate.

5. How will this experience impact your education or career decisions?
I am a doctoral student at the University of Memphis focusing on Special Education. My experience as a Fellow with UT Health Science Center, Boling Center is to tell others with “dis” “ABILITIES” to dream big and out loud and carry with them these four qualities in order to overcome society's negative views: perseverance, self-determination, pride, tenacity and never give up in pursuit of their dreams. The impact of my education and experience will lead the way for others with “dis” “ABILITIES” to believe in their dreams and hope and the possibility and capabilities that they have something to contribute to society. I am a leader with “dis” ABILITIES that is here to empower the world and change society views and thinking about people with ABILITIES and to ensure that all people with an ABILITIES received the appropriate services and resources needed to live independently in their daily life. Moreover, my hope with the experience I have gain is to consultant and empower nurses and healthcare professionals and undergraduate and graduate students about the importance on “Person First Language” and how best to communicate and work with people with different ABILITIES.

6. What are your future goals? Where do you see yourself 5 years from now?
An immediate goal for me is to continue with obtaining my Doctoral Degree in Special Education. Afterward, I wish to become a Healthcare Consultant and work with nurses and specializing in I/DD to extend across all healthcare systems in the promoting of disability education training regarding “People First Language” when communicating with people with “ABILITIES”. I hope to use the leadership skills I have acquired during my tenure at my Fellowship to continue my passion in working with the American Nurses Association, (ANA) to create, develop, plan and implement disability educational training programs for nurses in all aspects of the healthcare system. Also, I am committed to increasing my leadership in the nursing field by networking and attending seminars, workshops, and conferences for doctoral students to engage in conversations with the American Association on Intellectual and Development Disabilities (AAIDD) and the Developmental Disabilities Nurses Association (DDNA). Thus, I will continue to further my involvement with this knowledge base of “dis” “ABILITIES” education to clinics, universities, colleges, and hospital setting through seminars, training, workshops and in the workplace. A future goal of mine is to work with Department of Intellectual and Developmental Disabilities (DIDD) and the U. S. Department of Education to continue the conversation about disabilities education awareness and to work as a consultant to advocate for nurses with disabilities and for nurses who might become disabled. I want to implement policies, and standards that continue to ensure services to people with intellectual disabilities and nurses in the workplace. Finally, five years from now I will work as a Healthcare Consultant Advocate to nurses in the healthcare systems, be a tenure-track professor and obtain my ADA Certification as a professional Disability Expert to promote, protect and empower nurses’ and individuals with disabilities’ rights.

7. What recommendations do you have for other Fellows?
The Diversity Fellowship program has provided me with leadership skills and knowledge in the healthcare field in working with the American Nursing Association, Intellectual and Developmental Disabilities. It has allowed me the chance to become a Disabilities Expert in the education of society about people with “dis” ABILITIES and to raise awareness about how best to treat, communicate and work with people with “dis” ABILITIES. The recommendations, I have for other Fellows is to take every advantage of the opportunities presented to you and have an open mind to explore the unknown. You have gotten this far in your college career so take this trajectory and allow it to move you into your fate where you belong. Also, network and make connections while in the program and share your passion. Take every opportunity to utilize and acquire all the knowledge you can to become the leader you want to be and always see the person with “dis” “ABILITIES” as a person with possibilities and capabilities to contribute.

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