Changing How Healthcare Is Delivered
Always Uniquely Me App
A powerful app for communication and self-advocacy that ensures every emergency room visit is safer, faster, and supportive for people with IDD.
Project Summary
Always Uniquely Me is a mobile app that was designed to support the needs of people with intellectual and/or developmental disabilities (IDD) during medical visits – especially in high-stress environments like emergency rooms.
It’s an easy-to-use app that stores key information like medical history, personalized calming strategies and communication tips so that medical teams can quickly understand the person, not just the patient.
The app is designed for people with IDD and their caregiver(s) and is usable in any medical setting.
“I shared the app with my doctors, and they LOVE it! They said they can’t wait for others to use it too.”
– Coleen Mackin, Disability Self-Advocate and IEC Advisory Group Member
Why This Matters
People with IDD often face barriers to quality, person-centered care. Emergency situations can be especially overwhelming and confusing. Healthcare teams may not have the time, tools, or training to understand how to best support a person with IDD in the moment.
The Always Uniquely Me app solves this. It gives care teams instant access to information that can reduce harm, avoid unnecessary testing, and improve safety and comfort.
Testimonials
“I shared the app with my doctors, and they LOVE it! They said they can’t wait for others to use it too.”
– Coleen Mackin, Disability Self-Advocate and IEC Advisory Group Member
What's on the App?
- Snapshot of Me – A short video that shows who the person is when they are at their best.
- Tips for Taking Care of Me – Calming strategies, sensory activities, and triggers to avoid.
- My Medical Information – Key medical history and emergency details tailored to ER teams.
- Media-rich Format – Videos, audio clips, text, and pictures.
- User-controlled – Information is entered and managed by the person with IDD or their caregiver.
- Quick to Review – Designed so ER staff can understand the person in 2 minutes or less.
Always Uniquely Me Highlights
Swipe left/right to navigate
2025
Began pilot study with Northwell Health to test the app in 13 Emergency Rooms with 1,500 participants. The study will measure the impact on quality of care and use of ERs and other healthcare services.
2024
Partnered with Northwell Health and designed a pilot study using the Always Uniquely Me app.
2022-23
Designed and built the Always Uniquely Me app, a digital snapshot of a person with IDD’s healthcare needs.
Your Organization Can Use Always Uniquely Me!
Contact us to learn more about the Always Uniquely Me app and how your organization can access it.
Coalition Steering Group Members
Development of the Always Uniquely Me app was guided by the SCANS Steering Group, a diverse coalition that includes people with IDD, care partners/caregivers, clinicians, and other healthcare leaders. The Steering Group operates collaboratively, based on the principles of Authentic Community Engagement – learning from the lived experience of people from IDD and the perspectives of healthcare professionals and creating commonsense solutions.
Making Healthcare Better and Safer for People with IDD
IEC partners with people with lived experience of IDD and healthcare professionals to change the way care is taught, delivered, and paid for by creating new programs that center patients.