In the United States, millions of individuals live with intellectual and developmental disabilities (IDD), yet their unique needs often remain unmet. Despite being among the most vulnerable members of our society, people with IDD are frequently sidelined in healthcare data collection, leaving us with gaps in understanding and care. They face stigma, stereotypes, and inadequate attention—barriers that have persisted for far too long.
At the heart of the healthcare system, nurses are positioned to challenge these barriers, providing the person-centered care that so many individuals with IDD are still waiting for. Through compassion, expertise, and dedication, nurses advocate for, educate, and empower people with IDD, supporting their right to lead healthy, independent lives. This discussion highlights the essential role nurses play in transforming the future of care for people with IDD and why their impact deserves our attention.
A Growing Reality of Disability in America
You would probably need some time to digest after reading the statistics. In the United States, over 1 in 4 adults live with a disability. Among these individuals, 1 in 4 young adults aged 18 to 44 lack a usual care provider. (Centers for Disease Control and Prevention, 2023) In 2019, there were an estimated 7.4 million people in the USA with intellectual or developmental disabilities. (Residential Information Systems Project (RISP))
The Data Gap in IDD Care Access
This stark reality demands our immediate attention and action. Well, how many of them do you think currently have access to person-centered care? Personally, I prefer to rely on scientific data rather than make up rates, but unfortunately, I can’t do that this time. The reason is that people with IDD are often neglected in data collection and analysis, despite all recommendations.
Although significant and sensitive efforts are underway in this field, we still lack the capacity to fully understand the needs of people with IDD. Given that we have not fully won our fight against the stigma, bias, and stereotype culture that persists in daily life for people with IDD—and considering that these issues are quite prevalent even among healthcare professionals—it’s not surprising that there is a lack of research aimed at better understanding these individuals.
A Growing Demand for Person-Centered IDD Care
At this point, I don’t want to bore you further with statistics, but based on my readings, I can anticipate that the demand for person-centered care for people with IDD will continue to grow. The unique needs of people with intellectual and developmental disabilities must be understood and ultimately heard. The solution requires a multi-actor collaborative approach. In my opinion, one of the most important actors is nurses, who are often regarded as the backbone of the healthcare system.
Nurses as Catalysts for Change in IDD Care
According to Drozd and Clinch (2016), intellectual disability nurse interventions enhance the independence and decision-making skills of people with intellectual disabilities. This leads to better-informed choices regarding health and lifestyles, ultimately improving their quality of life.
Understanding the Essential Role of Nurses
How do nurses do that? I would love to tell you about everything in detail, but we do not have much time. However, I want to highlight a few key points so you can understand the importance of nurses’ role for people with IDD.
Holistic and Personalized Care
Nurses play a pivotal role in delivering holistic, evidence-based practice and person-centered care. They fully understand each participant’s unique needs while managing multiple chronic conditions.
Building Trust and Breaking Barriers
Nurses build and maintain trust in relationships and work to overcome communication barriers.
Relieving the Care Burden for Families
By sharing the caregiving burden with family members who have long cared for their loved ones, nurses provide essential psychosocial support.
Interdisciplinary Collaboration for Holistic Well-Being
Nurses collaborate across various disciplines and prioritize the well-being of those in their care.
Advocates for Rights and Equality
Nurses advocate for participants’ rights by challenging traditional barriers, biases, stereotypes, and stigma.
Educators for Health Literacy
With their modern role as educators, nurses can educate participants and their families, transforming them into health-literate individuals and thereby enhancing their health promotion.
Facilitating Community Integration
Nurses facilitate community integration, empowering people with intellectual and developmental disabilities (IDD) to engage fully in life and helping them to achieve safe, healthy, and independent lives.
Empathy in Action for Families
Through their empathy and understanding, nurses address the concerns of family members.
Enhancing Quality of Life
Nurses improve the quality of life for everyone involved in care.
The Backbone of IDD Care: Nurses as Champions
That needs to be seen. That needs to be heard. We see and hear that nurses, as the backbone of the healthcare system, are uniquely positioned to make a significant impact on the lives of people with intellectual and developmental disabilities. Nurses’ support and expertise not only enhance the health status of people with IDD but also contribute to the overall well-being of the community.
A Call to Action for Equal Care Access
In conclusion, we must strive together towards creating an environment that is free from health disparities, stigmas, and biases for people with IDD, where their rights are protected and advocated for, and where they receive person-centered care.
This Content Was Created by: Melek Akbas, Clinical Operations Coordinator in OneWell Health Care
References:
1. Centers for Disease Control and Prevention. (2023, May 15). Disability impacts all of us. Centers for Disease Control and Prevention. https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html
2. Residential Information Systems Project, (RISP) Minneapolis: University of Minnesota, RISP, Research and Training Center on Community Living, Institute on Community Integration. Retrieved from: https://risp.umn.edu.)https://publications.ici.umn.edu/risp/infographics/people-with-idd-in-the-united-states-and-the-proportion-who-receive-services
3. Mafuba, K., Chapman, H. M., Chester, R., Kiernan, J., Kudita, C., & Kupara, D. (2024). Understanding the contribution of intellectual disabilities nurses. Paper 4 of 4 – Impacts of intellectual disability nursing interventions. Journal of Intellectual Disabilities, 0(0). https://doi.org/10.1177/17446295241228044
4. Drozd M, Clinch C. The experiences of orthopaedic and trauma nurses who have cared for adults with a learning disability. Int J Orthop Trauma Nurs. 2016 Aug;22:13-23. doi: 10.1016/j.ijotn.2015.08.003. Epub 2015 Sep 7. PMID: 26573892.