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New Curriculum Prepares Nurses to Care for Individuals with Developmental Disabilities

A new and first of its kind curriculum designed for integration into existing primary care nurse practitioner residency programs to improve the health care experience for individuals with intellectual and developmental disabilities (IDD) has been developed by nursing faculty at the Golisano Institute for Developmental Disability Nursing at St. John Fisher College’s Wegmans School of Nursing.

The online, modularized curriculum features an in-depth overview of health care topics and best practices in the field of IDD care specifically designed for nurse practitioners engaged in primary care residency programs. The curriculum focuses on practice areas where health outcomes are dramatically different for patients with developmental disabilities such as reproductive health, or where enhanced skills can reduce complications and stress, as in behavioral health.

The content, which is divided into five online modules, aims to expand the resident’s understanding of attitudinal, communication, policy, programmatic, social, and physical barriers that individuals with IDD encounter in primary care settings. The new curriculum is being piloted in the Primary Care Nurse Practitioner Residency program at Highland Family Medicine, based in Rochester, New York, and will then be distributed to similar residency programs nationwide.

A nurse smiles
photo credit: St. John Fisher College

According to Dr. Holly Brown, associate director of the Golisano Institute, the goals of the curriculum are not only better health, better care, and lower costs but also improved knowledge, confidence, and skills for the nurse practitioner. She said that this combination improves the provider’s sense of well-being, which is a critical part of maintaining a thriving advanced practice nursing workforce.

“There have been too many situations where a patient with sensory challenges comes into a noisy, chaotic setting and may not react well to being overwhelmed. A nurse practitioner with these essential skills can improve the experience of the health care visit; for instance, by collecting health information and accommodation needs in advance. Nurse practitioners can also be change agents by leveraging existing billing systems to sustain and improve the quality of care for these patients,” she explained.

With this new curriculum, the Institute provides an accessible tool for nurse practitioners to address the disparities in health outcomes experienced by individuals with IDD, a group that includes more than 6.5 million people in the United States, according to a 2019 study conducted by the Centers for Disease Control and Prevention. Research has shown that these individuals face a decreased life expectancy due to myriad factors, including a lack of trained health care professionals and reduced access to routine screenings and exams. In addition, patients with IDD often have multiple and complex conditions, such that their care requires additional time that current care provider systems do not often accommodate.

child with IDD stacks legos
photo credit: St. John Fisher College

“Primary care nurse practitioners are on the front line of providing care for this population and yet we receive the least amount of training of any health care profession in working with people with IDD,” said Brown, who is a psychiatric mental health nurse practitioner in addition to her role at the Institute. “Many skills developed in this program are transferable to our other patients with communication challenges; for instance, older adults with dementia, people who have experienced a stroke, or individuals living with traumatic brain injuries.”

The program was made possible with support from the Golisano Foundation and through an Inclusive Health Innovation grant from Special Olympics International.

“Nurses comprise the largest health profession in the world and spend the most time with patients with IDD, so we were thrilled to fund this grant to help prepare them to provide the best care possible,” said Dr. Alicia Bazzano, chief health officer at Special Olympics.

For more information about the Golisano Institute for Developmental Disability Nursing, visit the website go.sjfc.edu/golisanoinstitute.