Addressing Health Inequities for People with Intellectual and Developmental Disabilities in the Hospital through Partnerships in Nurse Training

Authors

Suzannah Iadarola, University of Rochester Medical CenterFollow
Amanda Laprime, University of Rochester Medical CenterFollow
Samantha Hochheimer, University of Rochester Medical CenterFollow
Tabby Anvari, FACIEN Marketing ConsultancyFollow
Carrie Baker, University of Rochester Medical CenterFollow
Jacqueline Goodman, University of Rochester Medical CenterFollow

Abstract

People with intellectual/developmental disabilities (IDD) deserve the same access to quality healthcare yet are at increased risk of medical and/or psychiatric conditions as compared to the general population. Patients with IDD have less health satisfaction, shorter life expectancy, less access to preventative care, higher chronic health conditions, overuse of certain medications, and increased mortality. This population and their caregivers report high levels of dissatisfaction with emergency/inpatient care. Nurses also express frustration with lack of training, limited resources, and competing priorities.

We developed the Advancing Supportive Care through Education for Nurses on Disability (ASCEND) Program, to build the capacity of inpatient/Emergency Department (ED) nurses to understand the medical, social, environmental, and mental/behavioral health needs of disabled people. Tier 1 included five didactic modules that were integrated into the online learning platform for a major regional hospital: Attitudes and Barriers to Care, Adapted Nursing Care, Medical Comorbidities, Mental Health, Managing Crisis. Tier 2 included simulations with specific scenarios relevant to IDD presentations, barriers, and biases. Participants included nurses in pediatric and adult inpatient and ED units who participated in Didactics (n = 1,250) and Simulations (n =250). They completed measures at baseline (T1) and immediately after training (T2) capturing the following dimensions: disability knowledge, disability healthcare attitudes, clinical comfort, organizational climate, and training satisfaction (n = 280).

Analyses included descriptives on nurse demographics and group comparisons across scores pre/post training. Analyses showed that there were statistically significant differences between T1 and T2 domains of Clinical Comfort, Clinical Knowledge, and Organizational Climate. Nurses reported higher clinical comfort following training (p < .001), more knowledge (p < .001), and better organizational climates (p < .01). There was no statistically significant difference in Disability Attitudes domain scores between T1 and T2 surveys (p = 0.07561). The success of initial development and pilot deployment suggest the feasibility of the ASCEND model. Pre/post data will indicate preliminary efficacy of the tiered system of training. Scale-up and sustainability are planned, and next steps for the ASCEND program are discussed.

Plain Language Summary

People with intellectual and developmental disabilities (IDD) deserve quality healthcare like everyone else. Yet, people with IDD have worse healthcare outcomes than people without disabilities. They are less satisfied with their healthcare. They have more serious and ongoing health problems. They also have a shorter life expectancy. People with disabilities often say that they are not satisfied with care they get. This includes when they are in the Emergency Department (ED) and when they stay overnight in the hospital (inpatient). Nurses say that they do not get enough training or resources to meet the needs of people with IDD.

We developed a program called Advancing Supportive Care through Education for Nurses on Disability (ASCEND). ASCEND will help nurses better understand the needs of disabled people. In the first part of the program, we gave nurses five online training modules. Topics were: (1) Attitudes and Barriers to Care, (2) Adapted Nursing Care, (3) Common Medical Conditions, (4) Mental Health, and (5) Managing Crisis. In the second part of the program, nurses did simulations. In simulations, nurses role-played a medical visit with a person with IDD and their care partner. These people were played by trained actors. Simulations focused on topics related to advocacy, communication, and bias.

The nurses who participated worked with children and adults. This included 1,250 nurses who did the modules only and 250 who did the modules and simulations. Nurses filled out a survey before and immediately after training. The survey asked questions related to five areas: (1) disability knowledge, (2) disability attitudes, (3) clinical comfort, (4) organizational support, and (5) training satisfaction. We compared the survey responses for pre- and post-training. Nurses showed improvements in clinical comfort, clinical knowledge, and organizational climate. There was no difference in disability attitudes after training.

We were able to recruit many nurses to ASCEND. Our short-term training helped them improve on important areas of healthcare. The initial training was successful, and we plan to share ASCEND with other hospitals. We also aim to ask people with disabilities about the healthcare they receive.

Creative Commons License

This work is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 4.0 License.

Recommended Citation

Iadarola, Suzannah; Laprime, Amanda; Hochheimer, Samantha; Anvari, Tabby; Baker, Carrie; and Goodman, Jacqueline (2026) "Addressing Health Inequities for People with Intellectual and Developmental Disabilities in the Hospital through Partnerships in Nurse Training," Developmental Disabilities Network Journal: Vol. 5: Iss. 2, Article 12.
DOI: 10.59620/2694-1104.1148
Available at: https://digitalcommons.usu.edu/ddnj/vol5/iss2/12