OUR STORIES: VOICES FOR CHANGE

Stephan's Story

Stephan is a four‑year‑old child who has Down syndrome and experiences developmental delays that affect many parts of his daily life. He loves playing with bubbles, dancing to music, and is described as someone who is good at making people smile. Because his body has to work harder to fight off illness, he gets sick more often and for longer periods, and he frequently needs emergency department care. Medicaid helps by covering medical care, supporting in‑home assistance and respite for his family, and providing essential medical equipment, including a CPAP machine with oxygen to help with his sleep apnea. Even with these supports, Stephan has been on the developmental disability waiver waitlist for more than two years, highlighting the gaps between what he needs and what the system currently provides.