Alexea Wentz – ASHA Practicum

Hello, my name is Alexea Wentz. I am a Special Olympics Maryland Athlete Leader and Health Messenger. I have been an athlete for 11 years competing in cheer, dance, bocce, and bowling. I love writing, helping, and inspiring others.

I became a Health Messenger for Special Olympics Maryland about 3 years ago. Health Messengers are Special Olympics athletes who are trained to serve as health and wellness leaders in their communities by leading education and fitness activities and empowering athletes to advocate for the health needs of people with intellectual and developmental disabilities (IDD). I wanted to become a Health Messenger to help athletes like myself be the best versions of themselves and be healthy. Doctor experiences can be tricky and I want to help myself and other athletes advocate and experience good visits when they go to the doctors. I want us to be comfortable and not so intimidated.

Being a health messenger I have had a lot of amazing opportunities. I have had opportunities to do standardized patient work at the University of Maryland talking to future therapists, nursing students, audiology students from Towson University, and shared my hearing and doctor office stories. I’ve also been volunteering with the American Speech-Language-Hearing Association (ASHA) as part of their Communication Access Advisory Group.

In this group, I share my experiences as a person with a disability trying to communicate in healthcare settings. We also talk about what tools and resources could help patients and healthcare staff communicate better. I’m using this volunteer work for my Health Messenger practicum, and over the past six months I’ve been doing assignments related to this work. Each Special Olympics Maryland athlete Health Messenger is required to complete a practicum as part of their activation strategy. The practicum is designed to ensure Health Messengers are putting into practice what they learned at the Health Messenger trainings and helping them think about what leadership skills they have and can use as Health Messengers. 

A little about my health story, I always had a lot of sinus and ear infections ever since I was a young baby.  My parents took me to many different doctors and eventually an ear doctor who would be able to see what’s going on. I had fluid in both of my ears backed up behind my ear drums and was eventually found to have been born with a blockage in my sinuses that I had surgery to repair when I was about 1 year old. The doctors and the audiologist recommended that I have tubes to drain the fluid. I had six sets of tubes put in, but they only helped some. The fluid has always been a problem and has never really gone away, my hearing is kind of like trying to hear underwater. In first grade was when the audiologist and doctors first told me that it was time to consider getting hearing aids. Hearing aids transmit sounds and people talking into the hearing aid and into the person’s ears so that they are able to hear what you’re saying. When I got into the second grade is when I actually got hearing aids and I had a Frequency Modulated (FM) System. An FM system is when a teacher wears a microphone that transmits their voice into my hearing aids. The FM system allowed me to actually hear my teacher and not miss what they were saying. 

Hearing aids changed my life. It was a miracle that I could hear every word. Each day goes by and I am so thankful to have hearing aids. All I want is to hear what people say, be able to have conversations, and answer their questions. I am a great lip reader! Even when people are trying to whisper, if I can see their lips then I can usually tell you exactly what they are saying. A personality trait of mine is, I love chatting with anyone. But I very much do not like to go to the doctor’s office because communicating  with each doctor is a different experience. Some go very well and other times not so well. A lot of times doctors talk way too fast and personally, I need a slower pace so that I can properly understand and comprehend in order to know what they are saying. 

Going to the doctor feels very intimidating to me. Doctors often wear masks and talk to me, but because of my hearing loss I can’t hear them very well. When taking off my hearing aids, I wish doctors would wait until I have them back in so I can hear them giving feedback. Speaking directly towards me is also very important so I can read your lips. It is also important to me that doctors make things clear and explain things simply or in smaller steps. Sometimes doctors can use confusing terms that I do not understand. I am a self-advocate but sometimes I get frustrated and just don’t say anything. Then I end up leaving still not certain what they talked about. I think that doctors should take the time to understand their patients, not just me but anyone, especially those with disabilities. 

These experiences have led me to working with American Speech-Language-Hearing Association (ASHA). I got involved with the ASHA Communication Access Advisory Group in September of 2024, after meeting Adena Dacy, Associate Director, Health Care Services in Speech-Language Pathology when attending the Healthy Athlete Health Promotion station at the Special Olympics Maryland Summer Games. The ASHA advisory group is made up of speech-language pathologists, audiologists, nurses, public health professionals, and people with disabilities. We met over Zoom and each meeting had different topics that we talked about amongst each other. The first Zoom meeting we introduced ourselves and each shared different experiences in the healthcare world, and I shared about my frustrations when going to the doctor. 

We went over different resources to improve communications and some of the things that have helped most.  One of the group’s jobs was to identify, share, review, and organize resources into categories for the Communication Access Resource Hub. The resources we gathered already existed. Many were things that other members of the group had developed or used. Because there were too many to include in the final resource hub, we had to spend time prioritizing what was most important to professionals and patients/people with disabilities and how these should be grouped. The 3 sections of the hub are:

1. Communication Aids and Services (these are tools providers and patients can use with each other to support better communication access and patient self-advocacy)
2. Education, Training, and Implementation Tools (to teach other health professionals or students about communication access and how to start making strategies a part of your health care practice or system); and 
3. Related Resources, which are other existing organizations and programs related to communication access in health settings

The resource hub will be added to the bottom of the current ASHA Communication Access page by May 1: https://www.asha.org/practice/communication-access/

Our advisory group also took time to discuss where we saw gaps in the Hub’s resources and how ASHA might be able to fill those gaps with new products or programs. We also discussed ways to spread the word about Communication Access in health care with workers and students. Making sure people with disabilities have effective communication access in medical settings. Everyone agreed about the importance of people with disabilities being able to share their stories to empower others to improve communication access and be advocates.

I helped come up with resources for patients and healthcare workers to use. We had very good communication and everyone in the group was heard and pitched in to help come up with the resources and ideas. I was able to offer my personal frustrations in the healthcare world and mentioned that it’s great to know there are many resources out there. I am focusing on advocacy and to help get the word out about resources that are accessible for better experiences with communication. 

Until working with the American Speech-Language-Hearing Association, I never knew that there were any resources out there for me to use when going to doctors’ appointments. Since working with ASHA I have learned about a ton of helpful resources that I can share with anyone. Each person is different and that’s why the tools or resources used won’t be the same for everyone. All the resources are great and you can use them in different settings. My personal favorite resource is the health passport. The health passport has many different sections where you can put your personal information, reason for your visit, what helps you communicate, and then write answers for the questions the doctor may ask so you can feel completely prepared. 

As a Health Messenger getting opportunities to work with current and future healthcare workers and volunteering for things like the ASHA advisory group has been so impactful and empowering. I love sharing my ideas and learning about others’ experiences in the healthcare world. I am so glad I met Adena and was given the opportunity to speak about my experiences in the advisory group and help promote better communication in healthcare settings. I want to see communication get better, so everyone has the opportunity to understand everything going on at a doctor’s appointment. If you would like to see any additional resources on the website, definitely send your ideas over and keep in touch to spread the word about improving communication access in healthcare for people with disabilities so we can all be as healthy as possible.