For Desi, self-direction means living a life shaped by his choices and being understood on his own terms.
At 46 years old, Desi self-directs his services with a team designed around his preferences, communication style, and daily routines. Desi does not use spoken words to communicate, but he expresses himself clearly through gestures, facial expressions, assistive technology, and his responses to the people around him. In self-direction, those forms of communication are not secondary, they guide his life every day.
Before self-direction, Desi spent time in traditional settings where staff were responsible for multiple people at once. With limited time to build relationships and frequent staff turnover, Desi’s communication was often misunderstood or missed entirely. He was rushed, restricted by group schedules, and placed in environments that did not reflect his needs. As a result, Desi became frustrated, and his behaviors escalated.
Today, Desi receives consistent one-to-one support from staff who know him well. They understand how he communicates comfort, trust, and preference, and they respond to him as an individual. With that consistency, Desi has grown calmer and more confident. His behaviors have significantly decreased, and his ability to engage with others has expanded.
Desi now lives in his own house, where days go at his pace. Mornings are not rushed. He enjoys his routines, his meals, and the familiar rituals that help him feel grounded. From there, Desi chooses how he spends his time. He loves being out in the community – attending church, participating in social activities, and taking part in art and music classes. He enjoys singing, creating, and being around people.
Self-direction allows Desi to make his own choices: who supports him, where he goes, and how his day looks. He is not treated like a child or moved through someone else’s schedule. Instead, Desi is supported in ways that respect his adulthood, his preferences, and his need for dignity.
Self-direction is also affordable and efficient for Desi. By designing supports around what he actually needs, rather than paying for full-day programs or services, resources are used responsibly and effectively. Funding goes where it matters most: keeping him safe, stable, and engaged in his home and community. Sustaining this approach also depends on fair wages for direct support professionals. His mother Ruth emphasizes, “If wages are cut, the whole system is at risk. Desi and the self-directing community rely on these caregivers to thrive.”
Desi’s support system is carefully coordinated to meet his complex needs. His team includes 24/7 direct support professionals with enhanced staffing, a delegated nurse, a behavior therapist, Community First Choice services, and provider agency backup. These layers exist because Desi’s safety matters, but what makes them successful is how they work together to support his life, not control it.
Self-direction has allowed Desi to build a life where he is happier, more engaged, and more connected to the world around him. He is active in his community nearly every day, surrounded by people who respect him and care for him as an individual.