14 Questions to Include in Your IDD Emergency Contact and Care Profile
14 Questions to Include in Your IDD Emergency Contact and Care Profile
GEM Support Services | Northeast Florida IDD Resource
When an emergency strikes—whether a medical crisis, a natural disaster, or an unexpected situation requiring backup care—first responders and substitute caregivers need immediate access to critical information about your loved one with IDD. A comprehensive emergency contact and care profile can mean the difference between appropriate support and dangerous miscommunication.
This essential document should answer fourteen key questions that anyone stepping into a care role must understand instantly.
Medical Essentials: Questions 1-5
1. What are the primary and secondary diagnoses? List all relevant conditions including intellectual disability, autism spectrum disorder, Down syndrome, cerebral palsy, or other diagnoses that affect care needs.
2. What medications are currently prescribed, and what are the administration schedules? Include medication names, dosages, timing, and whether they must be taken with food. Note any medications that cannot be skipped without serious consequences.
3. Are there any allergies—medication, food, or environmental? Specify severity levels and what reactions look like. An allergy that causes mild discomfort requires different response than one causing anaphylaxis.
4. Are there seizure protocols or other medical emergency procedures? If your loved one experiences seizures, document exactly what responders should do, when to call 911, and what medications may be administered.
5. What dietary restrictions or requirements exist? Include texture modifications, feeding tube protocols if applicable, foods that trigger behavioral or digestive issues, and any choking risks.
Communication and Behavioral Information: Questions 6-10
6. How does this person communicate? Describe whether they use verbal speech, AAC devices, sign language, picture exchange, or behavioral communication. Include device passwords if applicable.
7. What are known triggers that cause distress or behavioral escalation? Be specific: loud noises, crowded spaces, disrupted routines, specific phrases, or environmental factors that should be avoided.
8. What calming strategies work when the person becomes distressed? Document proven de-escalation approaches: preferred comfort items, specific phrases that help, sensory tools, or environmental modifications.
9. How important is routine, and what are the non-negotiable elements? Some individuals can tolerate flexibility; others require precise adherence to schedules. Explain what absolutely cannot change without significant consequences.
10. What does pain or illness look like for this person? Many individuals with IDD express discomfort differently than neurotypical people. Describe behavioral signs that indicate something is physically wrong.
Emergency Contacts and Authorization: Questions 11-14
11. Who are the emergency contacts in priority order? Include multiple contacts with relationship descriptions, phone numbers, and best times to reach each person. Specify who has legal authority to make medical decisions.
12. Who is authorized to pick up or provide care for this person? List approved backup caregivers with contact information. Include photos if possible to aid identification.
13. What insurance information is needed for emergency medical care? Include insurance card copies, Medicaid numbers, and any pre-authorization requirements for specific treatments.
14. Are there legal documents that emergency personnel should know about? Note guardianship status, DNR orders if applicable, healthcare surrogate designations, or other legal considerations affecting emergency care decisions.
Creating and Maintaining Your Profile
Once you’ve answered these fourteen questions, create a one-page summary version suitable for first responders alongside a more detailed document for substitute caregivers. Store copies in multiple locations: your emergency kit, your vehicle, with trusted neighbors, and digitally accessible via your phone.
Review and update this profile quarterly—or immediately when medications, contacts, or care needs change.
Need help creating your emergency care profile?
📞 Call or Text GEM Support Services: (904) 670-7411
📧 Email: [email protected]
🌐 Visit: gemsupportservices.org
Every individual deserves to shine—even in emergencies.
