The Waiting Game: Treating Patients With Intellectual Disabilities in the Emergency Department

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SPECIAL REPORT: EMERGENCY PSYCHIATRY

The emergency department (ED) experience for a patient seeking psychiatric care can vary greatly and is dependent on available resources, access to mental health professionals, and the presenting diagnosis. This is certainly the case with individuals with intellectual and developmental disabilities (IDD). This population presents to the ED at nearly double the rate of those without IDD, and although patients with IDD are higher users of emergency services, the experience of visiting the ED can be problematic for the patient and their families.^1,2 Concerns from families of patients with IDD can include disappointing interactions with staff, lack of time for staff to appropriately manage and support a child with IDD, and an environment that is not designed for patients with IDD.³ When they do arrive at the ED for a psychiatric reason, unique challenges abound, including barriers to adequate communication, optimizing management of agitation, and increased boarding times when seeking inpatient care.^4,5 Furthermore, the often overstimulating environment of the ED and the limited training of ED staff add to the chaos.⁶

Increased Wait Times

There are several factors that increase wait times for this population in the ED. The most common psychiatric chief concern for a patient with IDD presenting to an ED is aggression.⁷ Aggression as an independent factor can significantly reduce the likelihood that an inpatient psychiatric unit will accept a patient and presents safety concerns for all involved in the ED. Many inpatient units will also not accept patients with IDD due to these units not having specialized programming or patients not fitting into the therapeutic milieu. This is highlighted in findings from a recently published study, which reported that approximately 30% of patients who were deemed appropriate for an inpatient level of care were ultimately discharged home due to being unable to find an accepting hospital.⁷ If patients are nonverbal, it can be difficult to assess them and rule out potential medical causes of their symptoms. Extensive interviews with family members may be required, which can prolong their ED stay. In addition, the clinical presentation of a patient with IDD can vary greatly depending on the level of adaptive functioning, comorbid psychiatric conditions, family dynamics, and the patient’s ability to engage in the evaluation.

As these patients wait in the ED, by necessity, the role of the emergency setting shifts to that of ongoing management. Although the ED is not ideal for acute psychiatric management for patients with IDD, the reality of access to care limitations combined with the often acute presentations for this population has necessitated the development of behavioral crisis teams and guidelines for aggression and agitation management in the ED.^8,9 Iatrogenic harm may occur in the ED due to lack of sleep induced by the ED environment, potential exacerbation of agitation due to overstimulation, and medications being changed or initiated, often without psychiatric consultation.

Managing Patients With IDD

Whenever possible, managing a patient with IDD in the ED typically requires an active ongoing role for psychiatric consultants, from assisting with the assessment, engaging in disposition planning, and even providing recommendations for further medical workup. With the limitations that many hospital systems have regarding 24/7 psychiatric services, some recommendations are proposed, focusing on brief, pragmatic interventions:

• Consider the space. If a patient with IDD is in the ED, consider placing them in the most ideal area and/or altering the space to minimize overstimulation and optimize safety.
• Remember the body and mind are connected. If a patient with IDD presents with psychiatric symptoms, one must always consider that a medical issue (eg, constipation, dental pain, infection) may be a significant factor.
• Talk to those who know the patient best. Given that many individuals with IDD have difficulty communicating their needs and their presenting problems, it is imperative to garner information from their main supports, from what can trigger them to the full history and timeline of the issue.
• Consider medication history. Prior to a full assessment, a full and accurate list of home and previously tried medications can be very helpful. Sometimes, home medications (eg, seizure medications) are missed, leading to an even more complicated situation, or medications that have exacerbated their symptoms are retried without knowledge of what occurred previously.
• Local resources are key. The ED team and psychiatric consultants need to familiarize themselves with local, available resources for individuals with IDD.
• Make a team decision. Collaboration with the patient’s outpatient care providers and support system, when possible, can transform and optimize recommendations and management.
• Use emerging guidelines. Consensus recommendations can help guide psychopharmacology and other interventions.^10,11
• Be patient. Evaluation and management of those with IDD often takes more time than for those without IDD.
• Consider the patient/family perspective. Managing a patient with IDD, particularly when they exhibit externalizing behaviors, can be frustrating. However, when someone presents to emergency care, it is likely that they and their families have experienced a variety of emotions and challenges leading up to the visit. Keeping this in mind can enhance empathy toward them.
• Use assistive tools. Items that facilitate communication and emotion regulation can be very helpful in the ED setting (eg, communication picture boards, sensory items).

Concluding Thoughts

It is certainly consensus that the emergency care of individuals with IDD is fraught with barriers to optimal care, including lack of time, training, and an appropriate environment. However, basic recommendations for clinical teams may not only help to improve the overall experience for patients and their families but will also improve the experience for staff and ultimately lead to better outcomes.

Dr Reynard is a clinical assistant professor of psychiatry at the University of Michigan. Dr Hong is a clinical associate professor of psychiatry at the University of Michigan.

References

1. Durbin A, Balogh R, Lin E, et al. Emergency department use: common presenting issues and continuity of care for individuals with and without intellectual and developmental disabilities. J Autism Dev Disord. 2018;48(10):3542-3550.

2. Lindgren S, Lauer E, Momany E, et al. Disability, hospital care, and cost: utilization of emergency and inpatient care by a cohort of children with intellectual and developmental disabilities. J Pediatr. 2021;229:259-266.

3. Elliott SA, Rahman S, Scott SD, et al. Seeking care for children with intellectual and/or developmental disabilities in the emergency department: a mixed methods systematic review of parents’ experiences and information needs. Open Access Emerg Med. 2024;16:117-131.

4. Hoffmann JA, Stack AM, Monuteaux MC, et al. Factors associated with boarding and length of stay for pediatric mental health emergency visits. Am J Emerg Med. 2019;37(10):1829-1835.

5. Chun TH, Katz ER, Duffy SJ, Gerson RS. Challenges of managing pediatric mental health crises in the emergency department. Child Adolesc Psychiatr Clin N Am. 2015;24(1):21-40.

6. Nicholas DB, Muskat B, Zwaigenbaum L, et al. Patient- and family-centered care in the emergency department for children with autism. Pediatrics. 2020;145(suppl 1):S93-S98.

7. Hong V, Miller F, Kentopp S, et al. Patients with autism spectrum or intellectual disability in the psychiatric emergency department: findings from a 10-year retrospective review. J Autism Dev Disord. Published online December 11, 2024.

8. Gerson R, Malas N, Feuer V, et al. Best practices for evaluation and treatment of agitated children and adolescents (BETA) in the emergency department: consensus statement of the American Association for Emergency Psychiatry. West J Emerg Med. 2019;20(2):409-418.

9. Gerson R, Malas N, Mroczkowski MM. Crisis in the emergency department: the evaluation and management of acute agitation in children and adolescents. Child Adolesc Psychiatr Clin N Am. 2018;27(3):367-386.

10. Pinals DA, Hovermale L, Mauch D, Anacker L. Persons with intellectual and developmental disabilities in the mental health system: part 1. Clinical considerations. Psychiatr Serv. 2022;73(3):313-320.

11. Constantino JN, Strom S, Bunis M, et al. Toward actionable practice parameters for “dual diagnosis”: principles of assessment and management for co-occurring psychiatric and intellectual/developmental disability. Curr Psychiatry Rep. 2020;22(2):9.