By: Regan Kelso
“Ms. Kelso, we have Cameron here in the nurse’s office saying that his stomach and throat hurt for the third time this week. Would you like to talk to him?”
I knew something was wrong when the school nurse called me nearly every day to tell me that my son, a 2nd grader, was in her office after lunch again. For several weeks, it was the same pattern.
Sobbing into the phone, Cameron complained about pain in his throat and begged me to pick him up from school. On some days, I would jeopardize my job and leave work early to take him home. And other days, I would leave him at school to finish the day in the nurse’s office. The days Cameron stayed at school were the hardest for me to swallow. I was riddled with guilt and unsure of what was happening. I was confused about what was the right thing to do as a parent.
I questioned whether Cameron was faking the pain and if he felt unsafe at school. I asked my son’s teacher if she suspected bullying. The teacher, who also had doubts about my son’s sudden illness, believed Cameron was avoiding classwork. I didn’t believe that to be the case, so I scheduled a doctor’s appointment. One appointment turned into three and a series of medical tests that would prove me and his teacher wrong.
Cameron was diagnosed with Eosinophilic Esophagitis, a chronic immune system disease that causes esophageal inflammation after eating highly allergenic meals.
A new diagnosis came with a new set of challenges. Life at home and school changed quickly. And everyone involved in Cameron’s education and healthcare had to learn how to adjust to the unexpected changes.
I had to educate myself, an eight-year old, my family, and the school about Eosinophilic Esophagitis. And I did not know where to start. I was lonely, scared, and without resources. I needed a lot of support while working full time and caring for a sick child.
It was during that year that I learned to push through barriers of having limited transportation to doctor appointments and little knowledge of medical treatments. I learned laws on truancy and student’s rights. I empowered myself and became my son’s biggest advocate and what I didn’t know was that I was living an experience that would eventually lead me to becoming a Community Health Worker.
I sat in the pediatrician’s office numbly staring across the room at Cameron who slept peacefully on the exam table. The pediatrician had just left the room after sharing the new diagnosis that forced a long list of foods Cameron could no longer eat: corn, dairy, nuts, sesame, shellfish, soy, and wheat. I wondered, “how will I feed my child?”
The pediatrician’s nurse entered the room shuffling a stack of discharge instructions that included specialty appointments to schedule, referrals, and pharmacy prescriptions.
The doctor required that Cameron keep benadryl and an epi-pen at school for severe allergic reactions. I was given a typed note to give to the school nurse. The note felt like a ton of bricks in my hand. I was completely overwhelmed.
The next day, I took the note to the school nurse and explained that I did not have the medication yet because it was being filled and not ready for pick up. The school nurse pushed the note back to me and explained she was unable to accept a note from the doctor. The school district had to follow state-mandated guidelines for students who needed medication administered and stored at the school site. The instructions had to be filled out on forms created by the school district. The school nurse gave me several school letterhead forms to take back to the doctor’s office.
I went back to the doctor’s office in hopes of getting the forms filled out that day. I quickly learned that there is no same-day turnaround at the doctor’s office when multiple forms need completion. It takes three to seven business days before any paperwork can be picked up or faxed.
It took the doctor’s office the full seven days to complete the paperwork. Without the completed forms, signed by the doctor, the school was unable to accept medication.
In the days that Cameron was without medication at school, when he had a flare of esophageal pain, I left work early to give him medicine. And to make matters worse, my car stopped running. Life was so stressful during this time. I missed a lot of work and Cameron missed a lot of school. Lack of reliable transportation snowballed into bigger problems: loss of income, school truancy, and missed doctor’s appointments.
When schools closed during the pandemic, it became clear how many US families with school-aged children had basic needs unmet. Families needed linkage to food, rental payment assistance programs, and help finding COVID testing and vaccine sites.
CHWs integrated into school-based settings helped families navigate educational, health and social systems, bridging the gaps between traditionally siloed institutions.
In Oregon at Earl Boyles Elementary, Community Health Workers and Community Health Ambassadors (parent volunteers) reach out to and engage families who need help handling social stressors. School staff identify the families who can benefit from CHW services. The CHWs build rapport with the families and provide a wide range of tasks like getting access to healthcare, enrolling uninsured families into state healthcare plans, and linking families to resources.
In California, San Bernardino Unified School District collaborated with Loma Linda University Health, San Manuel Gateway Promotores Academy, and El Sol Neighborhood Educational Center to establish a Community Health and Education Worker (CHEWs) program.
In this contract-based program, Community Health Workers take a specialty course to learn how to address the unique social determinants that intersect health and education. The training equips CHWs with additional skills to properly support families who need help navigating the barriers that influence irregular school attendance. Community Health and Education Workers serve as liaisons between the community, home, and school connecting families to a wide range of resources that are underused in school settings like mental health services.
When school-aged children are diagnosed with a chronic or terminal illness, parents already grappling with caring for a sick child become the sole connectors between the isolated social systems, creating burnout that affects the family and child.
Having a trusted person to outreach, engage, and support families with resources can make a difference for those delivering and receiving educational and health services. CHWs and CHEWs support provides families with the space and time to care, heal, and manage health outcomes with less stress in both education and health systems.
Now that Cameron has graduated high school, I have thought about what life would look like if I had peer support from someone who knew how to move past the invisible red tape wrapped around the siloed institutions that leave disconnected families further away from having connection.
I’ve imagined many times how Cameron’s journey could have been different if CHWs were prioritized in education and health systems. The teacher or school nurse would have connected my family to a CHEW after the first few times Cameron missed class. The CHEW, with similar lived experiences, would have built a trusting relationship with me, conducted a home or field visit, making a recommendation to visit a doctor sooner. A medical release consent form would have allowed the CHEW to communicate and share information enabling a warm transfer to the clinic-based CHW at the doctor’s office.
A clinic-based CHW would speak to the doctor to explain, advocating on my behalf, the importance of having the forms signed and given to the school sooner. Either CHW would provide resources for transportation planning to avoid missed days at work and school.
I often think about my dreams for the progression of Community Health Work, especially when I am working with a family who reminds me of the earlier challenges my family faced leading to Cameron’s diagnosis. I wonder, why aren’t we doing more to reduce the burden families face navigating all systems dedicated to the health and well-being of our children? Why aren’t we prioritizing CHWs and CHEWs?
*EOE is an allergic gastrointestinal condition that causes an increase of white blood cells in the esophagus causing inflammation when certain foods, mainly the top 8 allergens are ingested. To manage EOE, foods containing the top 10 allergens must be eliminated and slowly reintroduced to milk, eggs, wheat, soy, peanuts, corn, shellfish, and sesame have to be eliminated and slowly introduced one at a time to determine the offending foods that worsen the illness.