e to the Future of Care lopmental Disabilities
losing a loved one . She also has a cousin with Down syndrome who drives her passion for IDD patients in the healthcare field . She is especially inspired by her family members who advocate for her cousin . She feels immense pride whenever she walks alongside them in the annual Buddy Walk that raises money for the National Down Syndrome Society .
Dannie Lusich grew up with Joey , the son of her mom ’ s best friend . Joey who ignited her love and advocacy . She also had an uncle with IDD , who passed away in 2005 . Dannie has always had a love for people with IDD because people with IDD she loves have always been in her life .
Delaney Sanders has several close family members and friends with IDD and a sister who works in special education . She has volunteered throughout her life in both healthcare and exercise programs with people who have IDD . She strives for a world where those with IDD can navigate life with equitable resources , respect , and ample opportunity .
Getting to Know the Patient with an IDD
Correct Terminology
When interacting with people who have IDD , it is important to understand that they are more than their disability ; they are who they are alongside their disability . Person-first language presents the person first and the disability second , i . e . “ person with autism .” The intention behind this distinction is that we can avoid essentializing their condition , avoid perceived and subconscious dehumanization , and ensure that the person is identified as what they have rather than what they are . Identity-first presents the descriptor / diagnosis first , i . e . “ autistic person .” Some in the IDD community prefer identity-first language to emphasize what they consider to be a core part of their identity ; they believe it can reduce the stigma by showing that their diagnosis is nothing to be ashamed of . Ultimately , the decision remains with the individual . The most important factor is to remain respectful with whatever identity they choose . When in doubt , ask .
Pain and Diagnostic Overshadowing
A large percentage of those with IDDs have mental health and physical comorbidities that are often undiagnosed or attributed as symptoms of their
IDD . This can lead to diagnostic overshadowing , which is when these diagnoses are left under or untreated . It is important that we work with multidisciplinary team members to identify the barriers these patients often face and enable equitable care . Pain is often one of these undertreated comorbidities , and difficulties with communication and comprehension can affect the assessment and treatment of these patients . We are ethically obligated to relieve pain and suffering as nurses . As students , we need to learn the various objective methods for assessing pain ( American Nurses Association , 2019 ).
Advancements in Nursing Education
Nursing education has a deficit of comprehensive content about people with disabilities and their pursuit of health , well-being , and autonomy . A promising solution for this knowledge deficit lies in the form of toolkits , exemplified by the one created by Villanova University College of Nursing . Tailored specifically for nurse practitioners ( NPs ) navigating the care for individuals with disabilities , this toolkit contains standardized patient cases , video clips demonstrating both
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