Lazaro's Story: A Riding, Camping, and Swimming Enthusiast

By Danny Schaible

My name is Danny Schaible. I live Maryland with my wife of ten years and two children. My daughter just started at ASU, where she’s studying business, while my 14-year-old son Lazaro lives at home with us.

Lazaro has level three autism. He was diagnosed when I started noticing some big differences between him and his sister at around two years old. He was not meeting developmental milestones and he was really struggling. It was a stressful time for us, as I was in the process of divorcing his biological mother, who has since passed, and there was a lot going on in the household. Getting that diagnosis was important for understanding what was going on and learning more about how to help and support him.

His intellectual and developmental disability means he needs help with a lot of activities of daily living. Lazaro also has a movement disorder called catatonia. Sometimes he struggles with processing and expressing his emotions, especially when he’s feeling overwhelmed or triggered, and he can get aggressive. He has experienced two extended stays in children’s psychiatric hospitals. His longest was about four and a half months, and he was 60 miles away from home. I traveled every day to see him, and it was a really stressful time for us. He also had some traumatic experiences there that we’ve been working through, including with medication that helps him regulate his emotions. 

Lazaro is about much more than his autism. He loves swimming. It’s one of his favorite pastimes. He also enjoys walks, riding his tricycle, and the outdoors in general: We love to camp and visit parks and other public lands as a family. He’s also a big fan of horseback riding and attends equine therapy once a week.
He receives the community pathways waiver, a Medicaid waiver administered by the state of Maryland. It took us three tries to get it, and that was only after I got support through Disability Rights Maryland. We had to demonstrate that Lazaro was in crisis, which he was. He’d been expelled from daycare because he was aggressive with staff and teachers and he was experiencing developmental regression. 

We receive self-directed services through the waiver that allow us to hire, train, and work with aides ourselves, rather than going through an agency, with me as his representative. Without that support, it would be impossible to keep him safe at home. Thanks to the waiver, he has a one-on-one home aide for 40 hours a week. His aide prepares food for him, spends time with him watching television and playing games, walks with him, takes him to swimming, and helps him stay active in the community. That waiver coverage also allows him to attend speech therapy remotely. 

I’m very politically active—I am a city councilman in addition to my day job—and it’s really important to me to advocate for kids like my son, who deserves an active life in the community with the supports he needs to thrive, and for fellow parents who need support and community. Applying for the Medicaid coverage he’s eligible for feels like wading through this inscrutable system that’s designed to fail. I don’t want other people going through that, and I want to make sure that these systems will serve my son, and all kids, as they grow up.