Several staff members and individuals supported by ADAPT are taking up important roles in Project ENGAGE, a research project that conducts interviews with people with developmental disabilities.
People with intellectual and developmental disabilities (I/DD) face microaggressions and a lack of understanding in everyday life, and the medical field is no different. Because of the incomplete care the I/DD community may face, ADAPT has introduced the HealthLink program to educate medical students on filling those gaps.
However, people with I/DD do not only deserve adequate care in the doctor’s office or the emergency room, but also in the field of medical research. With funding from the National Institute of Health, Katherine McDonald, PhD, and Maya Sabatello, LLB, PhD, who research at Syracuse and Columbia Universities respectively, launched a project to help people with developmental disabilities to take part in the advancement of their care. During the project, researchers asked people with disabilities various questions about medical consent and how they could be treated differently by doctors and researchers.
Hans Anggraito, a Self-Advocacy Specialist at ADAPT Community Network, discovered Project ENGAGE through SANYS, the Self-Advocacy Association of New York State. Hans connected the research leads to several people supported within ADAPT, even helping to organize a visit from the researchers to the 154th Street and Pelham Adult Learning Centers.
“It was a paid opportunity, so people felt valued,” Hans said. “At the same time, they got to be involved in a national study that will hopefully change the practice of medical research for the better.”
Eventually, Hans was asked to be a member of Project ENGAGE’s Steering Committee, which helps to further advise on the project and its direction. He agreed to join, but only on the condition that an individual supported by ADAPT could also participate. Yshevia Sessoms, who has been a longtime self-advocate and recently testified at an MTA accessibility hearing, joined the Steering Committee alongside Hans.
Since becoming more involved in Project ENGAGE, Yshevia feels that she can make a tangible impact on the field of disability research.
“I want everyone to be more aware that people with disabilities need clear communication,” Yshevia said. “I enjoy talking about the research and helping make medical providers aware.”
In all, she, Hans, and other ADAPT Self-Advocacy Specialists like Sophie Thurschwell were responsible for connecting the project leads with a quarter of their participants. Currently, the interviews are completed and researchers are compiling the data from interviews in the hopes of creating a toolkit that would help medical researchers become more informed about working with people with developmental disabilities.
“With this toolkit, researchers will hopefully not be afraid to approach a population that has in many cases been ignored or avoided,” Hans said. “It will include direct input from Self-Advocates.”
To find out more about ADAPT’s Self-Advocacy programs and services, contact Project Connect at projectconnect@adaptcommunitynetwork.org or 877-827-2666.
