Helping New Jersey Clinicians Close Care Gaps for Disabled Adults

Roughly 150,000 New Jersey residents have intellectual or developmental disabilities that hinder their ability to communicate with health care providers. But a pilot program from Rutgers Health has demonstrated that training can improve care for this vulnerable community.

Members of Rutgers Robert Wood Johnson Medical School and the Ernest Mario School of Pharmacy collaborated on the virtual education program that exposed healthcare students and practitioners to a mix of expert instruction and dramatized simulations of common interactions between caregivers and patients with intellectual or developmental disabilities.

"Working with intellectual or developmental disabilities is rarely part of standard training for health care providers," said Amy Fisher, program director for Rutgers Project ECHO (Extension for Community Healthcare Outcomes). "We wanted to reduce the uncertainty of working with this patient population, model communication and humanize care so frontline teams feel equipped when a patient with intellectual or developmental disabilities walks through the door."

Across 16 sessions, 212 unique participants reported a 32.6% gain in knowledge, and 45% said they planned changes in how they screen, educate and coordinate care. After sessions, 90% of respondents said their knowledge increased, 92% would recommend the format to peers, and 88% reported more opportunities to collaborate with other providers.

Eleven of the sessions used the Project ECHO telementoring model developed at the University of New Mexico. These classes covered communication strategies, psychotropic stewardship, seizure and dementia care, oral health, transitions to and from the emergency department, legal and ethical issues and palliative and end-of-life care.

The other five sessions used the dramatic simulations to bring those lessons to life with actors and real patients who live with intellectual or developmental disabilities, giving clinicians a safe place to practice taking histories, making accommodations and sharing decision-making.

Participants came from all 21 New Jersey counties and eight other states. The average attendance was 40 people per session. The largest number of participants came from the fields of nursing, community health and social work, followed by behavioral health, physicians and advanced practice nurses.

They also reported that the sessions would alter their practice. Planned changes clustered in patient education, quality improvement, clinical teamwork, safety checks and routine screening.

Les Barta, director of the Ernest Mario School of Pharmacy's Simulation Technology Program, said the simulation piece enabled students to ask questions and make mistakes before they meet patients.

Much of the series focused on obstacles that push people with intellectual or developmental disabilities into emergency departments for problems that primary care can manage. Transportation and caregiver burnout can complicate routine visits, and New Jersey has too few dentists who feel prepared to treat adults with intellectual or developmental disabilities.

The sessions emphasized simple accommodations like extra time, plain-language materials and sensory-friendly exam rooms, along with direct engagement of patients rather than defaulting to caregivers.

"Even if you're not a specialist, you can be equipped to provide the care they need," Fisher said.

Last year's pilot program, which ran for most of the academic school year, was funded by the WITH Foundation, a private organization dedicated to improving health care for adults with intellectual and developmental disabilities.

Organizers hope to continue offering the classes, add condition-specific tracks in autism and Down syndrome, strengthen women's health content and deepen partnerships with advocacy groups.

"Ideally, this would run annually," Barta said. "The more often we engage in this dialogue and practice together, the more comfortable practitioners become providing care to this community and reducing complications."