This blog post was co-authored by Sarah C. Bauer, MD, MS, and Meri Naumceska, MA, CCC-SLP.
Burnout. Disconnection. Frustration. These words are contrary to why we became a physician and speech and language pathologist but have been part of the reality of our daily practices. With the COVID-19 pandemic, we are grateful to practice. Overnight, our practices were moved from clinics to computers. Without telehealth, we would not be able to see our patients at all.
Prior to the pandemic, we often talked about how the business of clinical practice took us away from seeing our patients. We bemoaned the paperwork and bureaucracy that occupied more of our time than direct patient care. Now these musings about burnout seem ungrateful when our colleagues on the front lines are putting their lives and families at risk to care for the sickest members of our communities.
At the same time, other aspects of health care have been placed on an indefinite pause until it is safe to return to clinics and hospitals. This pause comes at a cost for the children and families we serve, as many lost direct services through school and private therapies. Indirectly, they no longer have the structure and routines of their daily lives and that their children need. To be sure, this is required to end the sickness and suffering caused by COVID-19.
Now the global health crisis is the COVID-19 pandemic, not burnout. The sentiment of “we are all in this together” has never been as true as it is today. This is the approach that is needed in the post-COVID-19 world.
With schools and clinics closed, there are few resources to offer families at their time of greatest need. And the situation was not ideal before the pandemic. Friends and colleagues remind me that this is what it feels like to not live in the United States and to care for children with developmental differences, including autism. While I knew this in my head, I am now humbled with this reality in my soul. We can do better, and a global solution is required both now and in the future.
To understand our own role in a global health solution, it is important to understand our story as clinicians. In 2015, Ms. Naumceska and I met in Skopje, North Macedonia, times that were pivotal in our own professional and personal developmental stages. In fact, this meeting was the foundation of a growing friendship and partnership to serve children and families throughout the world, regardless of geography or financial resources. In the abyss of productivity, billing, and electronic medical records that put barriers between us and our patients, we knew we could do better and wanted to change our corners of the world together. The struggles the families we saw were universal, as they sought therapies and treatments to help their children in any way possible.
According to the World Health Organization, autism is experienced by 1 in 160 children throughout the world. In contrast, autism is estimated to occur in 1 in 54 children in the United States. Early identification and intervention works, yet there are not enough specialists to meet the diagnostic and therapeutic needs of children. This dearth of specialists results in long waitlists at both diagnosis and treatment. Families throughout the world are left in the middle of systems that did not work before COVID-19 and are now even worse. These intersecting global population health crises – COVID-19 and autism – have a solution. One solution is a new system of care that uses technology to connect clinicians with each other and also with families.
Project ECHO (Extension for Community Healthcare Outcomes), founded in 2003 by Dr. Sanjeev Arora at the University of New Mexico, removes the barriers that prevent clinicians from connecting during times of uncertainty. Its foundational principles of connection through videoconferencing and demonopolizing knowledge mean that all people have access to information and decision making that improve lives when they most need it. It disrupts and deconstructs dysfunctional and hierarchical systems of care that prevent individuals from getting the care they need in their home communities. Both the visions of Dr. Arora and Dr. Kristin Sohl, the founder of ECHO Autism, predated the pandemic and are foundational elements of how we can provide health care to all communities at a population level, regardless of geography and financial resources.
For us, this solution started before the pandemic and has now taken on a new level of urgency. 70 Flowers is a non-profit organization founded by Ms. Naumceska and is a group focused on early identification and intervention for young children with developmental differences. It is her organization that will launch the first ECHO Autism in North Macedonia. For the sacrifices, lives, and lessons of the COVID-19 pandemic to be honored, these partnerships and collaborations are required to serve children and families who cannot access services through school and therapies for the foreseeable future.
From our own common experiences and friendship, a collaboration was born. 70 Flowers and ECHO Autism North Macedonia allow for a new way of being for children and families in North Macedonia and throughout the world. Technology allows us to support the children and families we serve as well as each other. For us, “we are all in this together” is our calling for hope in the future. It is a new beginning to serve all children and families who have lost services during the pandemic, who did not have them in the first place, and to remove the geographic and financial barriers that restrained us.