Children with special healthcare needs have unique medical histories and require special medical treatment. Ideally, pediatric tertiary care centers, such as Children’s Nebraska, are the home hospitals for these children and are prepared to care for their complex medical needs.
In an emergency, many of these children are cared for by local EMS and emergency departments that may not be familiar with their special needs, leading to an increased risk of delayed treatment, unnecessary tests, and even serious preventable errors.
The overall goal of Project Austin is to provide continuity of care to children with special healthcare needs as they transition from the hospital to home by creating community awareness and providing education to local EMS and emergency departments regarding your child.
Why Project Austin?
Project Austin was named in honor of a 15-month-old child named Austin Simon.
Austin was just 15 months old when he started having trouble breathing. Born with a congenital heart defect, he had been treated at Children’s, and when he was stabilized, he went home with his parents. But one night, he developed a blockage in his tracheostomy.
Austin’s parents immediately called 9-1-1 and the local EMS system reported to their home. Austin’s mom informed them of his critical airway, but with minimal knowledge regarding stabilization of a child with special healthcare needs, the EMTs began to try and ventilate Austin through bag-mask-ventilation. Austin was eventually transported to the closest hospital. The outcome was tragic and his parents were faced with the impossible decision of taking their son off of life support.
Even in their grief, Austin’s parents didn’t blame the paramedics. “They were scared to death,” explains Austin’s mother, Tiffany Simon, BSN, RN, CCRN, who is now Trauma Outreach Coordinator at Children’s. “They were doing their best, but they weren’t trained on how to stabilize a child with special medical needs.”
Through this tragic loss, Project Austin was born. This special campaign is aimed at training EMS workers and other medical providers about the needs of children like Austin.
Watch Levi’s Story: Project Austin in Action
How Do I Enroll My Child?
- Contact Project Austin Nurse Case Manager to enroll your child. Call 402-955-5733.
- Project Austin Nurse Case Manager will complete Emergency Information Form (EIF) with you regarding your child’s pertinent healthcare information.
- Legal guardian consent must be obtained. By signing the EIF you are giving consent for enrollment in the program as well as permission to share the EIF with pertinent medical professionals in your community.
- Project Austin Nurse Case Manager will send EIF to your child’s local EMS, community hospital, primary care provider, and caregivers. Based on community resources, additional education may be provided to these services.
What Do I Do Now That My Child Is Enrolled?
As a caregiver of a child with special needs, planning for emergency situations is critical. In addition to enrolling in Project Austin, we recommend the following steps to prepare for emergencies:
- If your child should need emergency medical care, such as contacting 9-1-1 or going to an emergency department:
- Notify 9-1-1 dispatch and medical professionals that your child is enrolled in Project Austin
- Present the EIF to the health care providers
- Plan in advance for emergency situations. Your planning as a caregiver of a child with special needs is critical.
- Invite EMS to your home in order to meet your child and caregivers
- Review the EIF and discuss your child’s medical condition and equipment with EMS
- Discuss roles in an emergency situation (how can EMS and ED staff assist you as the caregiver)
- Consider introducing yourself and your child to neighbors and other members in the community to assist in emergency situations.
- Keep copies of the EIF in the following places and replace with updated forms as needed:
- Home (where it can easily be found such as the refrigerator)
- School and childcare center
- With your child’s belongings (such as backpack or diaper bag)
- Places your child frequently visits (such as grandparents)
- Place emergency information form on medical bag, car seat, wheelchair for EMS to identify.
- Update the EIF every 6 months to 1 year, and after any of the following changes:
- Important changes in your child’s condition
- Any major surgery or procedure
- Important changes in the treatment plan
- Changes in doctors
Project Austin App – Coming Soon
Project Austin Emergency Information Form will change to a QR Code. Your Nurse Case Manager will contact you to switch your child from the orange paper Emergency Information Form to the QR code. 402-955-5733
How Do I Update the EIF?
Children with special healthcare needs have ongoing changes to their medical plan. Therefore, it is recommended the EIF be updated and new consent is obtained annually to provide emergency services with the most current information and to avoid medical errors.
To update the EIF, contact the Project Austin Nurse Case Manager:
What To Do Next
For Parents And Caregivers
Contact the Project Austin Nurse Case Manager by phone to review the current EIF and make appropriate changes. We will update the EIF and obtain phone consent for your convenience.
Once the EIF has been updated and consent obtained, we will mail a copy to you. Please replace personal copies with the updated EIF.
Project Austin Nurse Case Manager will send updated EIFs to your community contact list with instructions to replace old versions with the updated EIF. If there are any changes to the contact list, please notify us. We appreciate your cooperation in keeping emergency information current in order to provide the safest and most efficient care for your child.
For EMS and Emergency Departments
- Review the EIF on a consistent basis with crew and staff members
- Keep the EIF easily accessible (such as in ambulance or nurses station) for frequent review and quick access when the child presents with a medical emergency
- Consider incorporating the Project Austin child into your area dispatch system
Utilization of EIF
- When requesting medical care, caregivers have been instructed to inform 9-1-1 dispatch, EMS, and Emergency Departments that their child is a Project Austin patient
- Instruct crew and staff to utilize the EIF to guide collaborative emergent medical care for the child
- Children are provided Orange bracelets to assist you in identification that they are a Project Austin patient. Bracelets are placed on the patient’s medical bag, car seat, or wheelchair.
- EIF’s are printed in bright orange for easier identification. Look for the EIF in the patient’s medical/diaper bag, car seat, glove box, refrigerator, etc.
- For questions or training, contact Project Austin Nurse Case Manager: Call 402-955-5733.