Skip Navigation Links
September/October 2019Expand September/October 2019
July/August 2019Expand July/August 2019
May/June 2019Expand May/June 2019
March/April 2019Expand March/April 2019
January/February 2019Expand January/February 2019
November/December 2018Expand November/December 2018
September/October 2018Expand September/October 2018
July/August 2018Expand July/August 2018
May/June 2018Expand May/June 2018
March/April 2018Expand March/April 2018
January/February 2018Expand January/February 2018
July/August 2017Expand July/August 2017
May/June 2017Expand May/June 2017
March/April 2017Expand March/April 2017
January/February 2017Expand January/February 2017
November/December 2016Expand November/December 2016
July/August 2016Expand July/August 2016
May/June 2016Expand May/June 2016
March/April 2016Expand March/April 2016
January/February 2016Expand January/February 2016
November/December 2015Expand November/December 2015
July/August 2015Expand July/August 2015
May/June 2015Expand May/June 2015
March/April 2015Expand March/April 2015
January/February 2015Expand January/February 2015
ArchiveExpand Archive
November/December 2017Expand November/December 2017
PulseTemplate
September/October 2015Expand September/October 2015
September/October 2016Expand September/October 2016
September/October 2017Expand September/October 2017
Special Edition - EPRExpand Special Edition - EPR
Special Edition: Title V Technical Assistance MeetingExpand Special Edition: Title V Technical Assistance Meeting
Title V Technical Assistance Meeting
Trend Reversal: Uninsured rates tick upwards since passage of the Affordable Care Act
Resources for Promoting Healthy Behavioral and Emotional Development in Adolescents
Welcome to Pulse
Building Healthy and Resilient Communities Across Rhode Island
Heeding Lessons Learned from the Zika Response as We Prepare for Emerging Threats and Issues
From the President: Emerging Issues

 In Case of Emergency, CYSHCN Parents Now Have a Plan

In Oregon, family leaders collaborate with EMS on toolkit for ER trips

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.