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 = 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, and blood draws. An inventory of multisensory materials for distraction and relaxation was acquired.
The AIDDC sought consumer input for what type of information should be included on the nursing admission form to help serve clients with intellectual and developmental disabilities and improve their hospital experience. The responses included requests for more detailed information about the patient's personal preferences, communication style, sensory issues, motivators, and stressors. Based on staff response, an addendum to the nursing admission form was designed to provide improved information for staff on care management and communication. A program to provide consultation to hospital units on management and improved communication with their current patients with intellectual and developmental disabilities was created. The consultation has included the development of individualized communication boards for some clients.
During disability awareness month in October 2008, a series of staff education activities were held, including communication strategies to promote positive health care encounters for individuals with intellectual and developmental disabilities and an interactive training program for when and how to use the teaching aids most effectively. Last, a program was presented for hospital staff on the state of intellectual disabilities services in Illinois. Continuing education units were offered for nursing and social work.
Efforts to improve communication with this group of clients also have included the development of a prehospitalization program for incoming adults with intellectual and developmental disabilities. Literature among other special needs populations (i.e., children and the elderly) has indicated that preparation for hospitalization and support during hospitalization improves outcomes (Ellerton & Merriam, 1994; Hulzebos et al., 2006; Lynch, 1994). The prehospitalization program allows adults with intellectual and developmental disabilities to come to the hospital prior to admission for a tour of key areas and an explanation of what will likely happen when they are here as patients. This experience allows patients and caregivers an opportunity to anticipate and prepare for the upcoming hospitalization.
It is difficult to get patient satisfaction data from clients with intellectual and developmental disabilities, as most patient satisfaction surveys do not provide demographic questions that would make it possible to separate data for this group of clients. The committee is looking into ways to gather satisfaction data.
A survey of other health care institutions found no other such programs (personal communication, Rush Older Adult Program, 2009). The program at RUMC provides valuable experience on improving hospital care and the hospital experiences for individuals with intellectual and developmental disabilities.