Caring for Patients with Developmental and and Intellectual Disabilities

Children and youth with developmental or intellectual delays/disorders (DD) use Emergency Department (ED) 1.8 times more  frequently than the general pediatric population. ^1,2 This population of patients includes those with autism spectrum disorder  (ASD), fetal alcohol spectrum disorder (FASD), or other conditions. This document provides recommendations for the medical  approach to these patients to assist in optimizing care.

• Individuals with DD have different abilities across domains, including their ability to communicate and understand.³
• They may demonstrate behaviours such as non-compliance, aggression, hyperactivity, self-injury, sensory sensitivities, self-stimulating behaviours and/or behaviours typically seen in younger children.
• Most patients with DD present to the ED for a mental health concern or acute behavioural change due to a variety of medical, behavioural, and/or environmental factors. Perform a full assessment.⁴
• People with DD face a higher risk of exposure to traumatic events than the general population.⁵
• Sepsis is both more common and more severe among patients with DD.^6,7
• Common medical issues that may present with irritability, aggression or behavioural change include:
  • • Dental pain
    • Ear infection
    • Skin breakdown (e.g., sacral ulcers/pressure sores in patients with limited mobility)
    • Fracture
    • GI disorders like constipation or pica, GERD
    • Seizure disorder
    • Allergic disorder

These 4 initial considerations will help to set the stage for a successful ED visit:

1. Identification: Identify patients with DD early in their ED visit to optimize their care. See Environmental Interventions below for immediate actions that can be taken at triage.
2. Communication: Determine how the patient communicates and their ability to comprehend. Are they non-verbal? Do they communicate with pictures/technology? Determine with whom (patient or caregiver) and how best to communicate. Is there a substitute decision maker or decision-making supporter?
3. Role of the caregiver: Caregivers serve as important interpreters of a child/youth’s behaviour and can help ED staff effectively interact with the patient to deliver appropriate medical care.
4. High-yield questions: The following questions can identify strategies for caring for patients with DD:

Once the history-taking is complete, various environmental, behavioral, and/or pharmacological interventions can be applied.

ENVIRONMENTAL INTERVENTIONS

• Limit time in the waiting room to reduce agitation and/or anxiety.⁸ For further information, refer to TREKK’s Care of the Agitated Patient Algorithm and Caring for Patients with Anxiety Bottom Line Recommendations.
• Place patient/caregiver in designated or quiet room that can be “stripped down” to minimize sensory stimuli, if necessary. Ensure medical needs can be addressed in this environment (e.g., lights can be turned on, medical equipment can be added as needed).
• Caregivers may have techniques/materials to soothe and/or distract the patient. Some EDs may have developed portable distraction kits with play materials of various textures and colors.⁹

BEHAVIOURAL & COMMUNICATION INTERVENTIONS

• The importance of behavioural management cannot be over emphasized. This is especially important for younger children.
• Procedures which could cause distress (i.e. venepuncture) may need to be avoided unless medically necessary.¹⁰
• Be flexible and use shared decision-making to decide where non-urgent investigations should take place. Phlebotomy and other invasive investigations may be easier to obtain in the ED setting. Alternatively, many outpatient offices are better tolerated by patients with DD.
• Investigating and managing medical conditions in patients with DD can be challenging. Use shared decision-making with patients and caregivers on a case-by-case basis to plan your approach.

PHARMACOLOGIC INTERVENTIONS

• Indications for pharmacologic management include pain and acute behavioral symptoms, specifically agitation and aggression.⁹
• When choosing a medication/dose/route, consider previous response to medications, current medication regimen, contraindications in the medical and behavioral history, and current indications for medication use (e.g., procedural sedation, anxiolysis, etc.).^10,11
• In general, start with the lowest possible therapeutic dose to avoid adverse effects.^10,11
• Treat the patient’s pain using TREKK’s Pain Treatment Bottom Line Recommendations.
• If the patient is agitated or aggressive, follow TREKK’s Care of the Agitated Patient Algorithm and Medication Table.
  • If the patient is already on medication for behavioural symptoms (e.g., risperidone, olanzapine, or quetiapine), give regular dose on schedule or consider giving an additional 1/4 -1/2 of total daily dose (ensure below upper limit of dose range).¹²
  • Manage fall risk in all patients who have received chemical restraint medication.
• If other medications need to be prescribed (e.g., antibiotics), confirm the best formulation and route. Many patients with DD have oral aversion or sensitivities (e.g., taste, texture, smell).

Thank you to the following content experts who led the development of the Caring for Children with Developmental and Intellectual Disabilities Bottom Line Recommendations:

Ana Hanlon-Dearman, MD, MSc, FRCPC, FAAP, Professor of Pediatrics, Max Rady College of Medicine, Pediatrics and Child  Health, University of Manitoba

William Craig, BSc, MDCM, LMCC, FRCPC, MSc, Professor in the Department of Pediatrics in the Faculty  of Medicine & Dentistry, University of Alberta 

Shayna McNeill, MD, Developmental Pediatrician, SSCY Centre, Winnipeg, MB (v 1.0) 

Thank you to the TREKK Editorial Committee, editors Drs. Sarah Reid (CHEO) and Sey Shwetz (University of Saskatchewan), who provided editorial support and expertise in the development of this resource. Thank you as well to TREKK’s administrative team: Project Manager Megan Bale-Nick, Research Coordinator Jessica Meza Resillas and former Project Coordinator Mateja Carevic, (University of Manitoba) who coordinated the review and update process.

1. 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. 2020;S0022-3476(20)31120-3.
2. Lokhandwala T, Khanna R, West-Strum D. Hospitalization burden among individuals with autism. J Autism Dev Disord.  2012 Jan;42(1):95-104. doi: 10.1007/s10803-011-1217-x. PMID: 21404084.
3. Bradley E; Intellectual Disabilities Psychiatric Curriculum Planning Committee. Guidelines for Managing the Client with  Intellectual Disability in the Emergency Room. Toronto, ON: Centre for Addiction and Mental Health, University of  Toronto. 2002:1-36.
4. Scarpinato N, Bradley J, Kurbjun K, Bateman X, Holtzer B, Ely B. Caring for the child with an autism spectrum disorder in  the acute care setting. J Spec Pediatr Nurs. 2010 Jul;15(3):244-54.
5. Houck EJ, Dracobly JD. Trauma-Informed care for individuals with intellectual and developmental disabilities: From  disparity to policies for effective action. Perspectives on Behavior Science. 2022;46(1).
6. Meert KL, Reeder RW, Maddux AB, et al. Health-Related Quality of Life After Community-Acquired Septic Shock in  Children With Preexisting Severe Developmental Disabilities. 2020;22(5):e302-e313.
7. Huang S, Chang C, Lin C, et al. Adverse outcomes after major surgery in children with intellectual disability. Developmental  Medicine & Child Neurology. 2020;63(2):211-217. doi:https://doi.org/10.1111/dmcn.14715
8. Centre for Autism and Related Disabilities. Autism & The Hospital Emergency Room: A practical guide for health  professionals to meet the needs of individuals with Autism Spectrum Disorders. 2013. Accessed December 3, 2024
9. McGonigle JJ, Venkat A, Beresford C, Campbell TP, Gabriels RL. Management of agitation in individuals with autism  spectrum disorders in the emergency department. Child Adolesc Psychiatr Clin N Am. 2014;23(1):83-95.

For a complete list of the evidence that informed the creation of the Caring for Children with Developmental and Intellectual Disabilities Bottom Line Recommendations see the Evidence Repository here.

The purpose of this document is to provide healthcare professionals with key facts and recommendations for the diagnosis and treatment of community acquired pneumonia in children in the emergency department. The TREKK Network is not liable for any damages, claims, liabilities, costs or obligations arising from the use of this document including loss or damages arising from any claims made by a third party. THIS DOCUMENT IS SUBJECT TO FLL DISCLAIMER HERE: trekk.ca/terms-of-us