Problem Addressed

• Negative hospital experiences: Hospitalizations can be confusing and frightening for adult patients with intellectual and developmental disabilities; many report feeling vulnerable, fearful of encountering unfamiliar people and procedures, and unsure of how to communicate needs and preferences to hospital staff.^1,2,3 These feelings may lead patients to display an unwillingness to cooperate with medical care, which can compromise patient care and safety.
• Inadequately prepared providers: Although frontline hospital staff across many departments serve patients with intellectual and developmental disabilities, many lack the knowledge and training to effectively address their needs.^1,3 At Rush University Medical Center, a hospital-wide staff survey found that 30 percent of respondents reported at least weekly contact with adult patients with intellectual and developmental disabilities; however, many staff reported feeling ill prepared to communicate with these patients about hospital procedures, pain levels, and care plans.
• Longer hospital stays: Patients with intellectual and developmental disabilities often face longer hospital stays than do other patients, including those with other types of disabilities.^1,4

Description of the Innovative Activity

• Education, information, and comfort measures for patients and families: The program includes a number of patient-centered services designed to promote positive experiences in which patients and their families feel safe and informed, as outlined below:
  • Prehospitalization tours: To better prepare patients for hospitalization and, if needed, surgery, the program offers individualized 2-hour hospital tours to patients and their families before the day of admission. Trained staff walk with patients and caregivers through pertinent areas of the hospital, including admitting, surgery, and the unit in which the patient will be staying. The patient can see and touch some of the medical equipment that may be used to care for them and can receive a concrete explanation of what the hospital experience will entail.
  • Telephone “helpline” to secure special accommodations: Families and caregivers have access to a telephone helpline that can be used to request special accommodations (such as a private waiting area) or additional guidance in preparing for an upcoming hospital stay. Members of the hospital’s Adults with Intellectual and Developmental Disabilities Committee (see the Planning and Development Process section for more information) monitor the line and return telephone calls within 1 business day.
  • Procedure-specific information booklets: Patients, family members, and caregivers have access to a series of patient education booklets designed to improve communication about medical procedures commonly experienced by adults with intellectual and developmental disabilities. These procedure-specific booklets use photos, simple language, and tactile examples to outline and concretize the process of undergoing common tests and procedures, such as an electroencephalogram, computed tomography (CT) scan, or blood draw. Staff report that these booklets have been widely distributed.
  • Multisensory relaxation materials: The hospital offers a collection of multisensory materials to help relax and distract patients, including a variety of tactile and visual materials, and mobile multisensory environment stations that feature bubble columns, lights, and projectors that transmit soothing images onto a ceiling or into a CT scan tunnel. Patients, caregivers, or providers can request access to these materials.
• Support for nurses and other staff: The hospital offers multiple sources of support for nurses and other staff who serve adult patients with developmental and intellectual disabilities, as outlined below:
  • Additional information on admission form: An addendum to the nursing admission form prompts admitting staff to collect additional information from patients with intellectual and developmental disabilities and/or their family members, including his or her preferred means of communication and communication challenges, social and cognitive skills, physical and behavioral challenges, eating habits, and environmental needs and preferences. This information helps unit-based staff to better care for these patients. Although presently stored in the patient’s paper record, this information will soon be incorporated into the hospital's electronic medical record.
  • Consultation service: Members of the Adults with Intellectual and Developmental Disabilities Committee provide as-needed consultations to unit staff, particularly nurses, who have questions about patients with intellectual or developmental disabilities. Staff access the consultation service through the program’s telephone helpline or by calling or paging a member of the committee. A designated committee member responds, usually at the point of service, providing guidance on how to develop a care plan, use individualized relaxation or soothing techniques, and/or identify and implement strategies to help a patient better cope with and understand the hospital experience.
  • Ongoing training: The program provides ongoing hospital-wide educational sessions for staff. Past topics have included an overview of how to serve patients with intellectual and developmental disabilities and special sessions on serving patients with autism and those with severe and profound intellectual disabilities. Staff unable to attend the live sessions can view a videotape of them, and those who attend or listen can qualify for continuing education units in nursing or social work. The program also offers targeted training sessions on various topics, such as how to use the procedure-specific patient education booklets, and sponsors periodic "conversation on disability" forums with staff and members of the Employee and Organizational Development Department. Since October 2008, more than 350 staff and faculty have attended these various training sessions.
• Nursing care plans: Information provided in May 2012 indicates that the institution is developing nursing care plans specific to patients with intellectual disabilities. The care plans cover topics such as communication strategies, managing the environment, managing behaviors, and improving caregiver role strain. The care plans will eventually become a part of the electronic medical record.
• "Special Needs" Buddies: Information provided in May 2012 indicates that medical, nursing, and occupational therapy students are paired with patients with intellectual disabilities on request to serve as companions for patients with special needs. Students might read a book, look at a magazine, watch a television show, play music, or help the patient with such things as filling out meal requests. In this arrangement, patients benefit by getting a buddy while students have the opportunity to interact with patients with intellectual disabilities.

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Innovator Disclosures

Results

• Improved hospital experience: Patients and family members report that the program has helped to make their hospital experiences more positive and less frightening and confusing. Family members are particularly grateful for the prehospitalization tours and patient education booklets, both of which help them to remove the element of surprise from hospital stays, improve coping and cooperation with hospitalization, and prevent problem behaviors. Information provided in May 2012 indicates that to date approximately 30 patients have been assigned a buddy; these patients, families, and caregivers have expressed that they liked the program.
• Enhanced staff understanding, skills, and ability to communicate: Staff report that the program has increased their understanding of and ability to communicate with and effectively serve patients with intellectual and developmental disabilities.

Evidence Rating (What is this?)

Context of the Innovation

Planning and Development Process

Key steps included the following:

• Forming multidisciplinary committee: Concerned staff from a variety of departments and units, led by Child Life Services, convened to form the Adults with Intellectual and Developmental Disabilities Committee. Committee members include a special education teacher; the neurology unit leader; a staff physician (who also serves as a physician with a community agency serving adults with intellectual disabilities); and representatives from the older adult programs, patient and guest relations, interpreter services, social services, occupational therapy, community and mental health nursing, outpatient services, human resources, the Autism Resource Center, and Child Life Services. The committee met monthly for the first 2 years and now meets once every other month.
• Collaborating with the Rush Americans with Disabilities Act (ADA) Task Force: In 1990, Rush University Medical Center established an ADA Task Force to oversee efforts to make the medical center more accessible to patients, employees, students, and the community. Comprising a broad spectrum of administrators and other representatives from both the hospital and university sectors (more than 25 percent of whom have disabilities), the ADA Task Force has initiated at least 24 programs for improved access and services, as well as 19 disability training, outreach, and education programs, since its inception. Members of the ADA Task Force agreed to serve on the Adults with Intellectual and Developmental Disabilities Committee to ensure ongoing communication and collaboration with overall efforts to promote disability rights and access to care at the medical center.
• Conducting staff survey: The multidisciplinary committee conducted an electronic survey of hospital employees to get a sense for how often they have direct contact with adult patients with intellectual and developmental disabilities, and how prepared they feel for such encounters. The survey included staff from medicine, nursing, therapy, social services, dietary services, transport, registration, and housekeeping. The survey revealed that 30 percent of the 292 respondents had frequent or regular contact with such patients, and that many of these staff felt concerned about their lack of skills in communicating with and serving the patients. The committee used information gleaned from the survey to design program resources and training sessions.
• Developing program-related materials: In creating the patient educational booklets and the addendum to the nursing admission form, committee members consulted with nurse representatives from various hospital units to identify areas of need and ensure use of appropriate language. The committee also got input from representatives of a community agency serving adults with intellectual disabilities on the key questions to ask family members and caregivers during the admission process.
• Conducting chart reviews to facilitate ongoing improvement: According to information provided in April 2011, the committee conducted a 2-year chart review of admissions of adult patients with intellectual disabilities, gathering data on factors such as admission source, whether a decisionmaker has been designated, length of stay, diagnoses, standards of care initiated, and referrals. The data are currently being analyzed to identify common themes and opportunities for improving the patient experience.
• Developing the buddy program: Information provided in May 2012 indicates that medical and nursing students in collaboration with the Student Services Department recruited students for the buddy program. Student training was developed in collaboration with the Adults with Intellectual and Developmental Disabilities Committee. Approximately 50 students have been trained to date.

Resources Used and Skills Needed

• Staffing: The program requires no new staff, as existing staff incorporate program offerings into their regular job responsibilities. All committee members volunteer their time for program-related work.
• Costs: Data on program costs are unavailable, as the costs of various activities are spread out across departments. For example, the Human Resources Department supported administration of the staff survey and provides ongoing funding for outside speakers who participate in staff training/educational sessions, while the Child Life Services Department supported the development and printing of educational materials.

Funding Sources

Getting Started with This Innovation

• Obtain administrative buy-in: Improving services for adult patients with intellectual disabilities requires an organization-wide commitment, which cannot be secured without buy-in from top-level leaders. To win such support, share information that demonstrates the need for and potential benefits of the program.
• Provide adequate staff support: Ensure that staff have adequate resources, training, and support to help them better serve patients with intellectual and developmental disabilities. Staff who feel supported are more likely to remain committed to improving their skills in serving the population.
• Encourage multidisciplinary collaboration: Recruit committee members and other program participants from multiple units and departments, as the sharing of ideas and expertise from across disciplines will result in a more effective and more widely disseminated program.

Sustaining This Innovation

• Maintain consistent internal marketing: The program will lose momentum if staff are not aware of or forget about the extra services available for patients with intellectual and developmental disabilities. To avoid this problem, ensure that program service descriptions and contact information, such as the telephone helpline number, are widely publicized in internal communication sources such as newsletters or intranet systems.
• Consider making training mandatory: Program leaders should consider mandating that all employees participate in at least one session on serving patients with intellectual and developmental disabilities.