The Road to IDD COVID Vaccination: My Own Story

I am a hospital-based dentist, Director of a Hospital Dentistry Program, Director of a Post-doctoral Advanced Education in General Dentistry, and a professor at the Pacific Dugoni School of Dentistry in San Francisco, California. My hospital is a major center for organ transplantations in the San Francisco area, and among my many responsibilities is to ensure that an organ recipient must be in good oral health prior to the surgery.

BY Allen Wong, DDS, EdD, DABSCD | May 2021 | Category: Mobility

The Road to IDD COVID Vaccination: My Own Story

ABOUT THE AUTHOR: 

Wes Dotson is an Associate Professor in the Special Education Department in the College of Education at the University of Missouri and the Director of Applied Behavioral Intervention Services at the Thompson Center for Autism & Neurodevelopmental Disorders. After earning his Ph.D. in Behavioral Psychology in 2010 from the University of Kansas, he spent ten years at Texas Tech University and the Burkhart Center for Autism before coming to Columbia. He has been a BCBA since 2008. He has spent over 19 years in special education and clinical practice, working with individuals with autism and other developmental disabilities of all ages across school, clinic, home, community, and residential treatment settings. His primary areas of research and practice are social skills, relationship development, and successful life outcomes for adolescents and young adults with autism, as well as the preparation of teachers and other professionals to work successfully with individuals on the spectrum. Dotson spearheaded the Texas Tech University study on Daniel Tiger’s Neighborhood and autism.

As patients are often emergency cases, that means I have to be available 24 hours a day, seven days a week, having to do surgical and restorative dentistry so the patients are infection-free, in good oral health, and able to receive the life-saving organ transplant they require. When the COVID-19 pandemic started in 2020, I was a frontline health care provider from March until August when I became infected and a patient myself.

It seems all too surreal, just a little over six months ago, due to COVID-19, I was in the intensive care unit for four weeks, fighting off being put on a ventilator almost three times. Never in my wildest imagination would I have thought that the act of breathing would ever be so difficult, draining, and painful. It started after a short visit to the emergency room days before for treatment of a herniated disk. After discharge within 48 hours, I spiked a fever of 105 and was re-admitted through the emergency room. This time, I was diagnosed with advanced respiratory disease. COVID-19. Upon utterance of the diagnosis, I watched my oxygen saturation drop along with my spirit as the medical team kept encouraging me to “take deep breaths.”

The Academy of Developmental Medicine and Dentistry (AADMD) is an organization of physicians, dentists, and healthcare partners that advocates, educates, and increases access to care in an inclusive manner for those with intellectual/developmental disabilities (IDD). We at the AADMD realized early during pandemic crisis that this population was more vulnerable to contracting and dying from the disease, and also had been overlooked when it came to hospital visitor (care support) and ventilator considerations. We advocated with petitions for the above causes and created a white paper titled “COVID-19 Support Guidelines for Individuals with IDD During the Pandemic”. It never occurred to me that one day, the research that our members, partners and I did to create the white paper, along with my own research, would one day lead me to become my own self-advocate. 

On the first day of my COVID-19 admission, I realized how much physical and emotional strain it was, and thought to myself, “How could a person with IDD handle this?” I was isolated in a room, with no visitors allowed, had pressured oxygen constantly blowing into my nose, blood drawn on regular intervals a couple times a day, finger pricked for blood sugar levels, blood pressure taken, be given intravenous fluids, only ice chips (and no food for first three weeks to avoid aspiration), cathetered, and bed-panned. It all seemed never ending – not being able to sleep from the alarms, constant machine noises, and frequent interruptions for medical tests. The pain increased while my will decreased so quickly.

I was at a point where I made my peace with my God and was ready to be ventilated as the pain was so great. I vowed to myself that I would do whatever it would take to fight to get people with IDD protected as soon as the vaccine was available.

Finally, the medicines and my medical team at the hospital helped my body get better, though my emotional state was still very weak. After recovering and being discharged, I rehabilitated for a couple months, then trained to become a vaccinator. Thus began my journey to help get vaccinations to others.

Today, it is cause for celebration that our First Vaccination Clinic was held on March 27, 2021 at the Pacific Dugoni School of Dentistry in San Francisco. We were able to provide almost 300 vaccinations to those with IDD who reside and/or work in San Francisco residency. We partnered with the San Francisco Department of Public Health, Mayor's Office on Disabilities, Golden Gate Regional Center, Special Olympics (SO) Northern California, ARC of SF, Henry Shein Cares, and several other agencies to get the word out. We had plenty of volunteers including behaviorist, NPs, translators, social workers, SO staff, GGRC staff, audiology support.

“I am proud of the University of the Pacific Dugoni School of Dentistry family, for educating practitioners and providing humanistic care for individuals with intellectual and developmental disabilities in our Special Care and hospital dentistry programs,” said Nader A. Nadershahi, DDS, MBA, EdD (He/Him/His), who is Dean of the University of the Pacific, Arthur A. Dugoni School of Dentistry. “As we work to put an end to the COVID-19 pandemic, it has been incredibly rewarding to ensure equitable access and safely expand this care to provide life-saving vaccines. Thank you to our amazing leaders and volunteers.”

A mandatory orientation was held for all volunteers about our population, disparity of care, importance for vaccination in our population, some basic need-to-know information (IDD, autism, CP, Down syndrome) regarding their condition, people-first language/etiquette, behavioral support, and making all of it a person-centered experience.  

Some simple modifications of space, lighting (lowered), and sound were used to help provide a warmer setting. A couple rooms were set aside for those who could not mask, needed more private area, and/or needed stabilization. SO staff, behaviorists and others, helped entertain patients during the waiting period with stress balls, coloring sheets and health-related reading material (Passport). An hastily assembled orientation video for the patients (https://sfdental.pacific.edu/media/VaccinationDayAtPacific.mp4) was sent out in advance to show what was to be expected, in hopes of making patients more comfortable.

Though we requested J&J, we were given Moderna. Appointments were made for each person’s second dose. Having a prepared Clinic with oriented volunteers for this population is more efficient and a better experience for the patient and caregiver. Let's encourage others to create more of these types of clinics.

Everyone scheduled was seen, and the volunteers all seemed to have a great experience. A great touchpoint for future health providers! My heart was full; we received smiles and nods of appreciation. Many commented that they had never worked on this population before and now have a great appreciation of the wonderful cooperation that existed. A parent wrote that her child, who had unsuccessfully attempted to get a drive-by vaccination, was successful today. She relayed their child’s words which could not be said better: “Today, my future begins!”  

My challenge is to encourage, whenever possible, more specific clinic sites for a population that is among the most vulnerable. I recently heard a terrific quote that went something like this: “Equality is being invited to the party; equity is being asked to dance.” With what we accomplished, I felt as though we celebrated inclusive health by dancing… and the music was beautiful.

Through adversity, we grow stronger and more determined. I don’t think I would have been able to get through my personal crisis had it not been for the love and support of my family and friends. They gave me hope when I was depleted.

As for me, I am feeling better… and this vaccination effort is my therapy. 

ABOUT THE AUTHOR: 

Allen Wong, DDS, EdD, DABSCD, is a professor at the University of the Pacific, Arthur A. Dugoni, School of Dentistry, San Francisco CA, and a Global Clinical Advisor with Special Olympics. He is President of the American Academy on Developmental Medicine and Dentistry (AADMD). 

Read the article here.