In October 2022, the journal Health Affairs published a themed issue on disability and health. In one article, authors Friebel and Maynou discuss a study addressing dangers of hospitalization for people with intellectual and developmental disabilities (IDD). In the study, records were examined of hospitalized patients with IDD in England in the period 2017-19. Findings indicate the increased risk, up to 2.7 times more likely, of this population to experience avoidable safety events while hospitalized compared to non-disabled counterparts. Indications of five avoidable hospital safety events include: hospital-acquired infections, pressure ulcers, adverse drug reactions, blood clots in lungs and/or veins, and post-surgical sepsis. The safety events led to longer hospital stays and greater risk of death; there are burdens on health care resources on a variety of levels. The situation is shameful.
For some time it has been known that people with IDD experience poorer health status than the general population and this may place patients with IDD at higher risk for adverse events while in hospitals. Before entering the acute care space, people with IDD face barriers to accessing primary healthcare, including lack of provider education and training, physicians not welcoming patients with disabilities in their practices and taking specific steps to not care for this group. People with IDD then experience greater use of older medication regimens in treatment for health issues such as diabetes and hypertension and disparities in access to routine cancer screenings. Considering these issues, it should come as no surprise that people with IDD are often hospitalized with conditions that could have been addressed in primary care settings.
Actions to improve care, based on already available resources, can and should be taken to address the dangers of being hospitalized for people with IDD, including tailored programming/ reasonable adjustments in hospital care and training of leaders in improving healthcare with people with IDD.
Tailored programming/reasonable adjustment efforts across sites, such as Rush University Medical Center and Georgetown University Medical Center in the US and the Geneva University Hospital in Switzerland, include use of electronic health records to improve care, targeting educational programming to groups of professional staff, and other efforts. The vast majority of hospital systems use electronic health record systems and can develop customized aspects based on need. For example, at Rush University Medical Center, specific nursing standards of care were created and made available in the electronic health record system to support nurses in the planning and implementation of care delivery for patients with IDD.
Efforts at other institutions are being encouraged to implement tools in the electronic health record system to improve care. Many hospital systems also use learning management systems to provide ongoing learning and training opportunities for staff. Accompanying the above-discussed specific nursing standards of care at Rush, an educational module was implemented into the learning management system. More than 300 nurses completed the online training module, including nurses from four units targeted due to greater concentration of patients with IDD on those units (78% completed). Other efforts of targeted educational programming include training on effective documentation of IDD for Emergency Department staff, including nurses (48% completed) and advanced practice providers and physicians (39% completed), and training for support staff such as security, with results allowing professional staff to evaluate medical problems. Other efforts using existing resources include implementation of mock Joint Commission tracers of care to identify areas of breakdown of standards and protocols of care (such as with communication and transitions in care), student volunteer visits (neurodiversity allies) with patients with IDD, and providing educational materials on services to families and patients. Preliminary work indicates that such programming improves cost outcomes.
Health leaders require training to address health equity, a multi-factor cross-sectional issue. An example of leadership training to achieve health equity for people with IDD is the Golisano Fellowship in Developmental Disability Nursing. Nurse Fellows have led efforts to develop IDD friendly healthcare initiatives at an academic medical center and to improve access to home hospital programs for patients with IDD.
It is time for healthcare institutions to take a tailored programming/reasonable adjustment approach to care of patients with IDD and provide education/training opportunities to new leaders in the field. Using available resources to bring forward interventions that will benefit patients with IDD and promising new leaders has the potential to reduce preventable safety events for patients with IDD, the related effects on lengths of stay, mortality, and the resultant burden to the healthcare system.