Community Conversations
I have worked at the Partnership for about seven years and have been a part of unique projects that have helped facilitate changes to support and services for people with disabilities and their families. People with disabilities have the opportunity to share their lived experiences within the healthcare setting in projects like Healing Narratives and CHAT So when we receive a new grant, I view it as a way to learn from the community and put what I learn into action..
Last year, we received a grant from Patient-Centered Outcomes Research Institute (PCORI) called Building a United IDD Research Agenda Together. I was so excited when I heard that we had received the grant, but then I thought, “Wait, what does that even mean, and why should my peers with disabilities and I care about health research?” If I can be honest, I barely passed the one research class in grad school. (shhh.. That’s our secret. ?)
As our team began to discuss the project details, I discovered that the concept was something I had dreamt about for years. I have had many conversations with my friends that start like, ”I wish my doctor would…” or “I wish we could learn more about….” To my delight, this is precisely where this project started and is firmly grounded, having meaningful conversations with people with disabilities, family members, and researchers to improve health outcomes.
In these community conversations, we have people with disabilities, family members, and researchers. As I write this blog, we are preparing for the second one. I’m so excited to continue learning about what is needed to improve the healthcare needs of individuals with Intellectual and Developmental Disabilities. I appreciate the environment where people from different backgrounds and positions all come together and have equal opportunities to share their experiences.
Having these community conversations is the beginning of building the research plan; however, a plan is merely words on a page until committed people put them into action. Are you one of these people? If so, perhaps you should join the conversation.
I’m confident that with people who believe in the plan, it has the potential to lead to discoveries and better health outcomes for people with disabilities. When health outcomes are improved, people with disabilities can better live, work, and play in the community!
