Project Facilitates Communication Between IDD Community and Health Care Providers

I am excited to tell you about a fellowship I have been working on and an opportunity to travel to New Orleans for a conference about our work.

I have been working with Dr. Mary Ciccarelli and Dr. Katie Weber, medical directors for the Indiana Complex Care Coordination Collaborative (IC4) since March.

Our work attempts to show how health professionals can engage with people with intellectual developmental disabilities (IDD) and how to include them in their medical care along with their support person. We are helping to create a website called “4ourhealth.org” for people with IDD to work better with their healthcare teams, doctors and nurses. The website has information on healthy living, working with a healthcare team and managing heath conditions.

Other athletes involved in this project include Charlotte Miller, Chelsea Davis, Dorrie Zipperle, Karen Kerr, Liam Price and Ben Gregory. Drs. Ciccarelli and Weber sent us scenarios and scripts to review. Scenario examples include examinations of the belly, chest, ear-nose-throat and others. We also discussed needle sticks, going to the dentist and having mammograms. Athletes made suggestions on how wording would flow better to help a person with IDD understand. We suggested that the doctor talk to an IDD person and take their time explaining in terms that we understand.

Some athletes and caregivers have contributed by making videos. One shows athletes how to get ready for the visit. Another helps doctors by showing how to include a person with IDD in planning to avoid scary and uncomfortable situations. Check out some of them on YouTube.

This was a great learning experience for me and fellow athletes. I hope it will help those in the medical profession to feel more comfortable working with people with IDD.

Earlier this month, I traveled with Special Olympics Indiana Director of Organizational Development Elesia Yoon to the annual TASH Conference in New Orleans. TASH is a disability advocacy organization that brings together people who are enthusiastic leaders, experts and advocates from the disability community to share expertise.

We presented the IC4 project work to several advocates. We got some valuable feedback and questions in return, and we hope this will help people with IDD to be more involved in their healthcare plans.

We also had the opportunity to attend the other sessions, including one on self-advocacy from Project Action. Here are a few takeaways:

• How our voices are heard as individuals and as a group.
• Being more involved in decisions that affect our lives.
• Protecting our rights as a person with IDD.
• Speaking on my own behalf.
• Project Action provides support groups that will help with setting goals.
• Information on issues that affect our lives.
• Helping people with IDD make contributions that are important and to help them feel important.
• How to be on committees and contribute.

Another session that I attended was Emerging as a Leader. There, we discussed what it takes to be a leader, such as being open-minded, showing leadership by example, etc. We also talked about how sometimes a leader must improve on things, such as finding the positive in consequences, talking about what went wrong while being positive and to remove fear from failure. It was highly informative.

During downtime, we explored New Orleans. We visited the French Quarter, saw houses decorated with Christmas lights and ate at some good restaurants. I even tried food that I had never tasted before, like oysters and crawfish.

The trip was very informational, and I learned a lot. I hope that our IC4 project will help the medical profession and people with IDD.

Thank you Special Olympics Indiana for involving me in this fellowship and giving me the opportunity to present our work to the TASH Talk in New Orleans. It’s been fun.

Mellony Salla is a Special Olympics Indiana athlete and the Benton County coordinator.