Emergency Room Stabilization Protocol for Individuals with IDD

The Tennessee Department of Intellectual and Developmental Disabilities’ TN START Assessment & Stabilization Team in collaboration with the Tennessee Council on Developmental Disabilities, Vanderbilt’s TRIAD team, The Arc, and other clinicians have developed a guide for Emergency Room (ER) staff to utilize to better support individuals with intellectual and developmental disabilities. The protocol was developed utilizing information from the National Center for START Services’ Integrated Mental Health Treatment Guidelines for Prescribers in IDD and with input from members of the above organizations. The aim of the protocol is to give ER staff a quick reference guide and resources to consider when they are providing treatment to someone with IDD. DIDD plans to distribute this information to hospitals statewide. Please feel free to share this protocol with ER departments in your area. 

CARING FOR PATIENTS WITH INTELLECTUAL AND DEVELOPMENTAL DISABILITIES

DO

  • Talk directly to the patient, using a soothing, calm voice tone
  • If limited verbal ability – ask how the patient communicates (device, ASL, writing, etc.)
  • Use their family member/caregiver as a resource
  • Actively listen and validate their concerns
  • Explain why you are recommending a medication, treatment, test in a way the patient can understand (may help to demonstrate what will occur on someone else)
  • Ask a lot of exploratory questions using plain language beyond yes/ no answers, ask to elaborate in their own words, and check for understanding of the question
  • Build rapport and trust with the patient and caregiver for greater insight/disclosure
  • Take a whole person approach to evaluate contributing factors (medical or medication issues, mental health, social/meaningful relationship and engagement, environmental, recent stressors, trauma history, etc.)
  • Practice patience and kindness at all times, both the patient and caregivers may be in crisis
  • Explore baseline information – what is typical for the person, when was the last time they were doing well, how they typically respond to specific treatments, touch, possible challenges, increased frequency or stress, loss of skills, change in function, etc.
  • Approach the patient calmly and from the side during physical exam and describe what you are doing
  • Talk with them about their interests to briefly distract if needed during a procedure
  • Ask if the person has a legal guardian/conservator that needs to be included in treatment decisions. The person may not have a conservator and be a competent adult able to make their own treatment decisions. In either scenario, they should be properly informed of their options.

DON’T

  • Talk around or over patients or talk about the “problem” or what happened in front of the person if it is re-escalating the crisis.
  • Assume paid caregivers know them well – explore who is the best informant
  • Miss the value in what patients have to say or are displaying
  • Assume the patient will report concerns independently
  • Have the expectation that the patient trusts you – some individuals may respond negatively to doctors/hospitals/medical equipment (consider how you can minimize this component-ask the person or caregiver, see environmental considerations below)
  • Assume everyone with a particular disability has the same needs – understand how it impacts each person individually
  • Focus solely on reducing/resolving the primary symptom – instead, work to identify what it is a symptom of
  • Assume a presenting symptom is normal for them – ask!
  • Avoid approaching the patient from the front which may cause anxiety and fight/flight
  • Assume the presenting symptoms are related to their IDD – evaluate missed underlying medical causes (constipation, UTI, dental, pain, med side effects, etc.) or mental health causes (depression, anxiety, etc. is more prevalent and under-treated in individuals with IDD)
  • Ignore sensory sensitivities
  • Try to rush through your evaluation and treatment, if safe; it may escalate the patient
  • Assume the person is unable to understand or participate in treatment options or provide assent or consent.

ENVIRONMENTAL CONSIDERATIONS

  • Train all direct-care staff on how to communicate with people with IDD calmly without anger or reprimand and seek to understand what is causing their distress.
  • Have sensory/calming items available such as stress balls, fidgets, noise cancelling headphones
  • Make efforts to reduce sensory or other known triggers –
    • Visual – flickering, fluorescent lighting, bright contrasting colors (pastels/pale colors are more calming), a lot of items in the room
    • Audio – loud or unexpected sounds, loud TVs or music, humming mechanical noises, warn of any procedural sounds (e.g. blood pressure cuff deflating), repetitive noises
    • Tactile –light or firm touch, scratchy clothing, certain materials (latex, cotton, etc.), food and medication textures, tastes (strong, bitter, sour)
    • Scents – avoid strong scents (air fresheners, perfumes, ammonia, alcohol)
    • IDEAL: have a calm, low-sensory room available when needed
    • Ask about other known triggers (e.g. white lab coats, specific medical equipment, etc.)
  • Understand that waiting may prove difficult for the patient. Communicate wait times and ask what would be helpful for them to reduce distress.

ADDITIONAL RESOURCES:

  • TN START Assessment & Stabilization Teams | Contact Trey King: 615-440-3188 or trey.king@tn.gov
    Statewide resource for individuals with IDD who have complex behavioral or mental health needs. Provides prevention and stabilization through 24/7 crisis response, stabilization planning, training and education, consultation, and formalized partnerships. IDD Training available for staff. Find out more: tn.gov/didd/ast
  • Center for START Services Prescribing Guidelines for individuals with IDD and co-occurring mental health needs. Find out more here: centerforstartservices.org/IDD-MH-Prescribing-Guidelines

View or download this worksheet in PDF format.