Strength, faith, and love are three words that come to mind when speaking with Darren’s mother Shereé about how she has navigated life these last sixteen years, ever since her son Darren nearly drowned at the age of five at summer camp. The prolonged time under water caused anoxic brain damage and left Darren in critical condition, which resulted in permanent disabilities and complex medical needs (i.e., seizure disorder, cerebral palsy, spinal cord fusion, ileostomy, tracheotomy, Baclofen pump).
While under the care of a team of specialists at a local children’s hospital, Shereé and her family were introduced to the Model Waiver, a Maryland Medicaid program, which allows medically fragile individuals before the age of 22 years to receive the medical care they need in their own home. Without the support of the Model Waiver and The Coordinating Center, Shereé and her family would not have been able to afford care to address Darren’s nursing facility level of care needs in the home. “We were able to bring Darren home with the Model Waiver and with the support of our Clinical Care Coordinator at The Center. Not only did Darren benefit from and receive assistance from our coordinator, but the entire family benefited from our coordinator’s compassion and knowledge. She held my hand as I went through the transition of caring for an abled child to a child with disabilities.”
Years following Darren’s catastrophic injury, Shereé and her legal team got connected to The Coordinating Center’s Medical Legal Services Division for additional support at home and in the community. Darren was matched with a certified case manager and care management associate to supplement the support available through the Model Waiver/REM Program. Through comprehensive care coordination services, Darren was able to gain access to benefits in the community, develop and initiate a plan for transitioning into adult services after high school, receive support in scheduling and attending medical appointments, ensuring access to medications and supplies, navigate equipment concerns, transition nursing agencies to ensure more consistent support at home and much more.
Darren’s mom says he finds joy in being surrounded by the people. “Darren is non-verbal, but he has always been a jokester. He loves it when people talk to him and enjoys going on excursions in the community. He loves listening to music and watching America’s Got Talent,” said Shereé. Darren recently transitioned from the Model Waiver to the Rare and Expensive Case Management (REM) Program. REM provides Darren with access to high quality, medically appropriate health care services in a cost-effective setting outside of a managed care organization. With the support of family, school and the care management team, Darren has been able to live in his own home in the community with supports and he will soon graduate high school at the age of 21.
Shereé gets through life by leaning in on her faith, embracing laughter and staying positive. “It’s very easy to look at what Darren cannot do, but I choose to change my mind set and focus on what he is able to do. Shereé’s advice for someone considering The Coordinating Center is to “just do it.” “I did not realize how much support I received, until I decided it was too much for me to do myself. Darren has twelve different specialists, that’s a lot of doctor’s appointments! Having someone to hold your hand through life’s transitions is an incredible gift. Darren’s coordinators have helped us through the transition of nursing providers, applying for guardianship, SSI and so much more! It’s an emotional journey, so having someone to check in and see how you are doing is very helpful.”