Understanding the Needs of the IDD Community
Raising a child with an Intellectual or Developmental Disability (IDD) like Down syndrome comes with unique challenges and a deep desire to see them live independently and confidently. Every parent wants their child to make their own choices and lead a fulfilling life. That’s where tools like Primary Record come in, making it easier for individuals with IDD to share important information and make informed decisions, helping them take charge of their own lives.
How Primary Record Supports the IDD Community
Primary Record is an application designed to simplify medical information for families. It can empower individuals with IDD and their families. Jim McIntosh, co-founder of Primary Record, understands firsthand why a tool like this is so important. His daughter Mia, who has Down syndrome, inspired his deep appreciation for how vital it is to empower individuals with IDD. Now 20 years old, Mia can confidently share important details like her allergies, emergency contacts, medical conditions, and doctor’s information using a simple QR code on her phone. You’ll see in the video how proud Mia is to take on this responsibility—something often handled by adult guardians. You’ll see in the video how proud Mia is to take on this responsibility—something usually managed by adult guardians. This confidence is making a real difference in her life, lifting her spirits and motivating her to embrace new challenges.
Mia’s Story: Sharing Information with Ease
Imagine Mia needing assistance from adults around her. With Primary Record, she can easily share her critical health information via a QR code on her phone. This video showcases how Mia can communicate her needs, reinforcing the immense value this provides to Mia and her family. The ability to share essential health information instantly ensures that Mia receives appropriate care promptly, enhancing her safety and autonomy.
Tracking the Scan
Primary Record also has a tracking feature that lets you see when and where the QR code is scanned. This way, you’ll know exactly when your family member’s information is accessed, giving you extra security and peace of mind.
While the video didn’t show this, Primary Record keeps a record of every time and place the QR code is scanned. Soon, this information will be sent as an alert to the medical profile collaborators via email, so everyone stays informed.
How to Set Up Primary Record for Your Family
Setting up Primary Record for a family member with IDD is straightforward and user-friendly. Here’s a step-by-step guide to get started:
Create a Profile
Start by registering for an account on any web browser at https://www.primaryrecord.app. Then, create a detailed profile for your family member, including important medical details like emergency contacts, allergies, conditions, and doctor’s information. Much of this information can be automatically added when you connect to their patient portals!
Generate the Link on the Summary Report
Navigate to the family member’s profile to select Reports and create a Link/QR code for a Summary Report.
Download the QR Code to the Phone
Download the QR code associated with the medical summary report to the phone.
Add the Photo Widget and Select the QR Code
iOS:
- Open iPhotos and add the QR code to the library.
- Add a photo widget to the home screen. (Helpful video)
- Select the QR code image for quick access.
Android:
- Download the Simple Photo Widget from the Play Store
- Add a photo widget to the home screen.
- Select the QR code image for quick access.
Practice Finding and Sharing the QR Code
We practiced with Mia on how to find and when to share the QR code on her phone. This practice helps her feel confident about sharing her information whenever she needs to.
Get Started with Primary Record
Provide your family members with IDD with the tools they need to make supportive decisions and effortlessly share critical information. Set up Primary Record today and see its positive impact on promoting their independence and safety!
