The Matheny Medical and Educational Center is a special hospital and educational facility in Peapack, N.J., for children and adults with medically complex developmental disabilities. In 2011, we received a $300,000 grant from the RWJF New Jersey Health Initiatives program to develop, implement and test a model for improving the quality of transitional care for persons with chronic health issues and medical complexities associated with developmental disabilities.
Funds from the grant have allowed Matheny to hire a full-time transitional nurse who accompanies our patients when they are transported to either of our two partner hospitals, Morristown Medical Center or Robert Wood Johnson University Hospital in New Brunswick, N.J. Our transitional nurse, Jeanne Lavelle, RN, who has been in this position less than a year, says, "There are many little positives that have come as a result of the transitional nurse position, and they happen every time I go with one of our patients to the hospital." However, one recent hospitalization illustrates just how important this position is.
Matheny has several patients with Lesch-Nyhan Disease, a rare metabolic disorder characterized by severe dystonia, spasticity, speech impairment, renal disease, varying degrees of cognitive deficit and the hallmark symptom, compulsive self-injury. One of our LND patients was hospitalized at Morristown Medical Center for pneumonia. All of his safeguarding equipment needed to be explained, his wheelchair provided and coverage by a personal care assistant arranged. During the hospitalization, the patient developed respiratory distress and needed to be intubated. Because of the relationship that has developed between the MMC staff and the transitional nurse, a hospital nurse manager contacted the transitional nurse while she was on her way to the hospital. The 24-hour time period was critical because the patient has the ability to block his own airway as part of his LND behavior. The opportunity for the Matheny transitional nurse to explain his behaviors to the MMC LN and members of the ICU staff enabled them to make appropriate decisions about his care. Everyone involved at Morristown Medical Center was appreciative our presence, and the open lines of communication and spirit of cooperation may well have saved this patient's life.