Addressing Delayed Hospital Discharges for Patients With Intellectual and Developmental Disabilities and a Mental Illness

Compared with the general population, adults with IDD are more likely to have a delayed discharge. For example, a review of U.K. studies found that up to 88% of inpatients with IDD experienced such a delay (3), and a Canadian study reported that inpatients with IDD and mental illness were five times as likely to experience a delayed discharge as inpatients with mental illness only (4).

Extended hospitalization can lead to negative outcomes for all patients, including hospital-acquired infections, physical deterioration, and loss of important relationships (5), but hospitals are particularly challenging for people with IDD. Most psychiatric units lack the consistency, structure, and calm sensory environment necessary for this group (6, 7). Unsupportive environments, along with poorly trained staff, can escalate distress and increase restraint use and seclusion, contributing to further deterioration, reduced communication and adaptive skills, and increased risk for being a victim of abuse (7, 8). Furthermore, delayed discharges cause a cascade of system challenges, including treatment delays and worsening of untreated conditions for other patients, increased costs, and staff burnout (3, 5).

Although the factors contributing to delayed discharge for people with IDD vary, several key challenges are often present. The first challenge is insufficient appropriate community housing for people with IDD. Compared with other groups, patients with IDD are less likely to return to their previous home after hospitalization (9), and the lack of appropriate, affordable, and supported community housing is one of the most commonly cited reasons for delayed discharge of such patients (3, 10). In addition to causing delay for the patient, this situation creates pressure for hospitals to discharge individuals with IDD to inappropriate settings, including family homes with inadequate supports, homeless shelters, or nursing homes (10), which can result in failed transitions and rehospitalizations (7).

The second common challenge is siloed and fragmented systems. In North America, the mental health and IDD sectors typically operate separately with little integration or coordination, making it challenging to find appropriate resources to support patients with both mental illness and IDD in the community (1, 11). Additionally, despite legislation affirming the rights of people with IDD to needed care, many psychiatric services exclude individuals with IDD (12). Even when patients are eligible, organizational policies may prohibit cross-sectoral care during the transition period, such as IDD providers engaging with patients before discharge or hospital clinicians continuing to provide mental health support after discharge.

The third challenge is that patients and families are not effectively included in transition planning. Often it is incorrectly assumed that patients with IDD cannot participate in decision-making processes; however, with the right supports, these individuals can and should be included (2, 13). Furthermore, although people with IDD are more likely to rely on caregivers for support, adult-oriented health care often fails to include caregivers, resulting in poor-quality transition plans and unsuccessful transitions (10).

Finally, another key challenge is an insufficiently prepared workforce. Providers in both the mental health and IDD sectors often lack the training, knowledge, and skills to effectively support people with both IDD and complex mental health needs (1, 14). Consequently, hospital clinicians may struggle with correctly diagnosing the conditions of such patients, providing appropriate care, and liaising with IDD services to support successful transitions. Community‐based mental health and IDD providers may be reluctant to provide posttransition community care. These workforce challenges pose additional barriers to identifying the community housing, staffing, and clinical supports necessary for successful transitions.

Although many principles for effective transitions applicable to other long-stay patients can also apply to patients with IDD, we note some important differences. Individuals with IDD often experience delayed discharges at much younger ages and rely on aging parents for support (4). They also typically require discharge to community IDD residential settings rather than community mental health or nursing home settings.

To address these challenges, an extensive environmental scan of the literature and consultations with more than 100 stakeholders, including hospital providers, community mental health providers, IDD agencies, system planners, and patients and their families, was conducted in Ontario. The findings of this process were used to adapt existing hospital transition quality standards (15) for this population, vetted by an expert review panel. The resulting practice guidance (10) includes 10 core components.

First, throughout the hospitalization and transition period, a process should be in place to support ongoing information sharing with everyone involved. This process requires establishing communication channels between hospital providers and the IDD sector, which is not typically included in hospital-to-community transitions.

Second, patients should receive a trauma-informed comprehensive assessment of their health care and disability-related support needs, including their cognitive and adaptive profile, to inform the transition plan. Without an appropriate developmentally informed assessment, mental health issues may be overlooked or mistakenly attributed to the IDD (i.e., diagnostic overshadowing) and patient needs may be misunderstood.

Third, patients and their families should be involved in transition planning. Effective involvement of patients with IDD requires specific accommodations, such as use of easy-to-read documents with simple language and images, augmentative and assistive communication devices, and caregiver-supported communication.

Fourth, training and support should be provided to the patient, as well as the family members or community providers who will be responsible for the patient’s ongoing mental and general medical health postdischarge. In the community, patients often rely on support from IDD providers, who have minimal training in recognizing and supporting mental and general medical health needs. Similarly, community health care providers (e.g., psychiatrists and primary care providers) lack adequate training in caring for this population.

Fifth, a written plan outlining the transition process, along with postdischarge housing and community supports, should be developed and shared with the patient, family, and all health and IDD providers involved in care. Because of the complex needs of individuals with mental illness and IDD, such plans should be flexible and responsive to changing needs.

Sixth, transitions should be graduated, overlapping, and coordinated. To this end, both hospital and community leaders should be identified to jointly coordinate transitions. Because an abrupt change can be particularly challenging for this population, the transition process should be adapted to meet individuals’ needs. This adaptation may require a graduated transition with a period of overlapping care, which may be longer than is typically required for psychiatric patients.

Seventh, patients require medication reviews before discharge, and a plan should be in place for ongoing medication monitoring and administration in the community. Individuals with mental illness and IDD are likely to be prescribed multiple medications, including psychotropic medications, and their medication needs might change once they are no longer in a hospital setting.

Eighth, before discharge, all health care providers required to provide ongoing care in the community must be confirmed (referral alone is insufficient). All patients require a primary care provider, with most also requiring mental health providers and other specialists. Given the complex needs of individuals with mental illness and IDD, a team-based approach is optimal.

Ninth, appropriate housing and community supports are needed to meet patients’ needs and foster feelings of safety and inclusion in the community. Typically, these are IDD residential homes rather than community mental health or nursing homes. The SHEDD (Successful Housing Elements and Developmental Disabilities [https://toolshedd.ca]) tool can aid in designing spaces that meet the unique needs of this population.

Tenth, sufficient and flexible funding must be available to support the transition process and ensure that necessary housing, staffing, and services are in place to help individuals thrive postdischarge. Although this provision may appear costly, it is typically less expensive than a patient remaining in or returning to the hospital (7). Flexibility in funding is crucial to account for unexpected needs, which may arise in the early stages of transition, especially for patients with extended hospital stays.

In some cases, implementing these components can be accomplished through action at the provider or organizational level. Strategies to support practice change at these levels include aligning with or building on existing initiatives for other populations (e.g., older adults) and positioning the transition core components as modifications to typical practice, rather than completely new approaches. However, addressing the underlying gaps that contribute to delayed discharges also requires system-level actions. Such actions may include constructing tailored housing for individuals with IDD, investing in both the mental health and IDD workforce to increase capacity (e.g., the Link Center in the United States [https://acl.gov/TheLinkCenter]), developing integrated data systems to inform system planning and real-time responses to patient needs across both sectors, and implementing flexible policies and procedures to support enhanced cross-sector communication and coordinated care. Advocacy for these system-level actions can be supported by comprehensive data on the costs that delayed discharges pose to individuals, families, and systems.

The disproportionately high rate of delayed discharges among mental health patients with IDD causes significant harm to them, their families, and the health care system. Timely transitions are necessary to uphold the rights and autonomy of patients with IDD, ensuring that they receive appropriate care in settings that meet their needs. Addressing delayed discharges can reduce health care costs and make health care systems more efficient. Successful transitions for patients with IDD require a patient-centered and cross-sectoral approach, involving patients, families, hospital teams, community mental health, primary care, and IDD providers. Action is required at the provider, organizational, and system levels to address the challenges contributing to delayed discharges among individuals with both mental illness and IDD.