“As parents of individuals with special needs, we constantly live in a state of fight. I feel like I HAVE to live one day longer than my son to ensure he is always taken care of.” – Laura, mother of Josh
Josh is a 33-year-old social, funny, and kindhearted person who has never met a stranger. He loves making people laugh and thrives in his community. But he also faces significant challenges due to Fragile X Syndrome and moderate intellectual and developmental disabilities (I/DD). He relies on Medicaid’s Innovations Waiver for in-home care, day supports, and other essential services that allow him to stay active and engaged. Despite difficulties, Josh’s mom Laura expresses deep gratitude for the enormous positive impact Josh has had on her life.
“Medicaid provides a lifeline because nine out of ten times, people with disabilities have more medical needs that most of us wouldn’t be able to afford,” says Laura, Josh’s mother and legal guardian.
Josh struggles with safety awareness, and his tendency to wander has been a constant concern for his family. In 2024, Laura requested a home security system through the Assistive Technology, Equipment, and Supplies (ATES) service to help ensure his safety. The system allows his family to track his movements and provide him with an alternative way to call for help in an emergency.
After months of persistent advocacy and negotiations the security system was provided, ensuring Josh’s safety at home.
For Laura, this victory was about more than just a security system. It was about facilitating Josh’s independence while keeping him safe. Medicaid also provides him with access to community programs, a gym membership, and other essential services that help him live a full life.
“Without Medicaid, we’d lose all his community-based services. It would be hard. I have to work, so this gives him an opportunity to go out and socialize with his own peers,” she explains.
Laura has become a fierce advocate, challenging misconceptions about Medicaid and disability support. She knows firsthand that these services aren’t luxuries—they are necessities.
“All Medicaid does is allow us the opportunity to give our children the ability to be a part of their community, be seen, be heard. And there’s nothing wrong with that,” she says.
With his mother’s love, the support of his community, and the vital assistance of Medicaid, Josh continues to live a life filled with laughter and connection. Laura remains steadfast in her fight, not just for her son, but for all families navigating the same journey.
“Parents like me shouldn’t have to fight so damn hard to make sure our kids are taken care of,” she says. And yet, Laura makes it clear she will never stop fighting.