Meet Robert

“It makes me happy to advocate for others. I’ve shared my story at U.S. Senate press conferences and in Maryland’s General Assembly. This year I testified in Annapolis on the Self-Directed Services Act of 2022, on behalf of the Self-Directed Advocacy Network. This bill passed! And it became law on October 1, 2022. It will give me and others the support we need to keep living in our communities,” says Robert.

Robert and his mother Jeneva are the dynamic duo, deeply committed to advocacy and equity for people living with disabilities. Both Robert and Jeneva have a passion for writing and advocating for others. So much so that Robert became a member of Little Lobbyists and a graduate of the Arc of Maryland’s Partners in Policymaking program within two years of graduating High School.

Robert is a very active 25-year-old. When he’s not busy advocating for others, he enjoys playing Challenger Baseball, taking classes at Upcounty Community Resources, Inc. and music classes at Montgomery College. Robert is also an artist and enjoys going to art museums and likes drawing paintings of animals, as well as doing abstract paintings. Robert has a unique painting technique, where he paints with his knuckles while using gravity to create brushstrokes. He also sometimes uses his medical equipment to make designs and stamps to create abstract art.

Robert has been receiving services from The Coordinating Center for 10 years, first with the Model Waiver Program, and now with the REM Program. He has had several coordinators who assisted him with finding a better medical supply company, obtaining coverage for his high-dose vitamin therapy, and navigating medical bills. Rob has a long history of acid reflux disease and aspiration pneumonia, which causes a high risk for all the complications of aspiration, including death. He needed to be tube-fed overnight (continuous pump feeds) to save his life.

Rob has never let these complications determine his future and enjoys sharing his story with others. “It makes me happy to advocate for others. I’ve shared my story at U.S. Senate press conferences and in Maryland’s General Assembly. This year I testified in Annapolis on the Self-Directed Services Act of 2022, on behalf of the Self-Directed Advocacy Network. This bill passed! And it became law on October 1, 2022. It will give me and others the support we need to keep living in our communities,” says Robert.

“My family doesn’t think of our lives in terms of “overcoming” narratives. Disability is a part of life and including people with disabilities in their communities is a matter of breaking down social barriers and working to incorporate adaptations. Everyone has the civil right to live in their own community,” says Jeneva, Rob’s mother.

When asked about a song or quote that he lives by, Robert shared the song “Don’t Stop Believin” by Journey and says that “it’s important to keep believing in yourself and to never give up.” Jeneva’s advice to someone considering joining The Coordinating Center is “Don’t be afraid to ask for what you need and challenge your coordinator to rise to the occasion. Remain steady in your belief that your child deserves supports to live their best life in their community, and not in an institution.”