Parents of children and youth with special health care needs (CYSHCN) and medical professionals in Oregon recently teamed up to address a topic of special importance for CYSHCN and their families: planning for a trip to the emergency room (ER).

The collaboration was led by two people who came to the issue from the different perspectives of each group: Tamara Bakewell, the family involvement manager of the Oregon Title V Children and Youth with Special Health Needs (CYSHCN) program, serves as family representative on the Oregon Emergency Medical Services for Children (EMSC) Advisory Committee. Through this appointment she worked alongside Rachel Ford, the EMSC program coordinator on several projects.

In 2017, Tamara arranged for two family members of the MCH workforce to lead a webinar for EMS providers on autism and cerebral palsy. The parents talked about how autism and cerebral palsy are “spectrum” disorders, meaning that no two children are alike with the same diagnosis. They also shared tips and techniques with EMS providers about communication and positioning, and gave a parent perspective about what it feels like to need to call 911 or send their child in an ambulance.

From this webinar, the EMSC Advisory Committee tasked Tamara and Rachel with co-creating a publication to help families prepare for a trip in an ambulance or to an ER. Over the course of a year, Tamara and Rachel, joined by members of the committee and by parent partners from the Oregon Family to Family Health Information Center (OR F2F HIC), developed a set of guidelines and tools for families. This toolkit, Planning for a Trip to the Emergency Room, is being distributed throughout Oregon to parents and professionals in various EMS settings.

During the writing process, the toolkit benefited tremendously from the involvement of a member of the family workforce: Tami Martin. Tami is a former Association of Maternal Child Health Programs family scholar and is currently a parent partner with OR F2F HIC. She writes:

“When I was asked to read the draft of Planning for a Trip to the Emergency Room and provide feedback, I felt a perspective was missing – a voice which reflected my child, who has complex medical health needs and is non-verbal. So, I surveyed the team of OR F2F HIC parent partners with several questions to dive deeper into the topic. I collated their responses and provided a more in-depth perspective of what families might need.”

As a result of Tami’s work, the toolkit (download) provides not only technically correct advice for parents, but also information and advice that comes from the lived experiences of the family workforce. Tami shares, “Whenever families can come to the table with the providers of the systems they navigate, barriers are reduced and understanding increases for all participants.”

This is just one of several parent-professional collaboration projects in Oregon that support the work of CYSHCN.  For more information about Oregon’s approach of including families in policy-making and its new Family Workforce Association, contact Tamara Bakewell.

The Oregon Title V (CYSHCN) program, as well as the Oregon Family to Family Health Information Center, is within the Oregon Center for Children and Youth with Special Health Needs.