Hospital program for working with adult clients with intellectual and developmental disabilities.

The hospitalization of individuals with intellectual and developmental disabilities provides unique challenges. Length of stay (LOS) for this population is often longer than that of other individuals and than that of individuals with other disabilities (Walsh, Kastner, & Criscione, 1997). Patients with intellectual and developmental disabilities report feelings of vulnerability, loss of control, fear of what was going to happen to them (Parkes, Samuels, Hassiotis, Lynggaard, & Hall, 2007), and difficulty communicating their needs to hospital staff (Iacono & Davis, 2003). It is difficult to find hospitalization satisfaction results for individuals with intellectual and developmental disabilities, but limited research has indicated that, at best, individuals with intellectual and developmental disabilities report feeling neutral about their hospital stay (Hulzebos et al., 2006; Iacono & Davis, 2003). Rush University Medical Center (RUMC; Chicago, IL) has long-standing efforts to improve access to care for individuals with disabilities, including incorporating principles of universal design into new buildings and retrofitting of old buildings, training of personnel in disability awareness, and partnering with the community. The Rehabilitation Institute of Chicago awarded RUMC and Rush University College of Nursing the 2004 Henry Betts, MD Award, a top corporate award for disability rights and employment advocacy. RUMC also was cited by the Robert Wood Johnson Foundation (Princeton, NJ) as setting a standard of excellence in the crisis of health care for people with disabilities (Rush University Medical Center, 2009). Furthering these efforts, the Adults With Intellectual and Developmental Disabilities Committee (AIDDC) was formed at RUMC in 2007 following a town hall meeting where staff raised concerns about their training to serve patients with intellectual and developmental disabilities. The AIDDC is multidisciplinary, with representatives from nursing (neurology, psychiatry, community, systems and mental health), child life services, social services, employee and organizational development, patient satisfaction, medicine, volunteer services, and outpatient services. The AIDDC established a mission ‘‘to foster awareness, sensitivity, and skills related to individuals with intellectual and developmental disabilities in order to promote partnership in the healthcare experience. ’’ Initial efforts of the AIDCC included a survey conducted among RUMC employees who had direct contact with patients, including departments such as medicine, nursing, therapy services, social services, dietary services, transport services, registration and housekeeping (N 5 292). Of those who responded, 12% indicated that they had frequent contact (daily or almost daily), another 18% indicated that they had regular contact (at least once per week), and 70% indicated occasional contact (once a month or less) with adult clients with intellectual and developmental disabilities. Areas of concern were communicating with clients to avoid clients becoming upset and for calming clients, explaining hospital procedures, assessing pain levels, and preparing clients for discharge. Additional consultation with staff identified specific hospital procedures for which they felt a need for improved communication, including electroencephalograms (EEGs), computed-tomography (CT) scans, and phlebotomies. Consultation with interested consumers identified a need for improved communication with staff regarding the specific care needs of adult clients with intellectual and developmental disabilities. Based on the surveys and consumer input, the AIDDC developed a series of client-specific material for improving communication. Procedure-specific information booklets and sequence boards using photos, simple language, and tactile examples were developed for EEGs, CT scans, INTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 48, NUMBER 2: 145–147 | APRIL 2010