Benjamin is 27. His younger brother Jacob is 24. Both self-direct their services, and for them, self-direction is the foundation that allows two very different young men to live fuller, healthier lives with the individualized support they need.
Benjamin has significant medical and communication needs. He requires assistance with toileting, receives nutrition through a G-tube, and communicates through a combination of signs, a device, and behavior. He is also social, active, and expressive in his own way, with clear preferences about how he wants to spend his time. As his family explored traditional options after he finished school during COVID, it became clear those settings were not a good match.
“He has an idea of how he wants to spend his day,” his mom, Kim, explains. “And the programs we found were not meeting those needs or those desires.”
Jacob’s transition looked different. Because Benjamin began self-directing first, Jacob moved directly into self-direction when he turned 21. With consistent one-on-one support and the ability to shape his days around his own goals, Jacob has grown noticeably in independence. He now gets himself dressed, manages parts of his daily routine with support, and has begun expressing interest in working and volunteering in the community.
Through self-direction, both brothers help design their days alongside their caregivers. Their schedules include activities like bowling, shopping, volunteering, library visits, and skill-building at home. Structure is still present, but it is flexible and responsive, allowing their days to reflect their interests, energy levels, and individual needs.
That success depends heavily on the people who support them. Both Benjamin and Jacob rely on one-on-one care for daily
living, health needs, and behavior regulation. Trust and familiarity are essential. After years of high staff turnover in other arrangements, self-direction finally brought stability.
“We have gone through probably at least 40 different staff over the years,” Kim shares. “Now we finally feel like we have stability, because we can pay caregivers more.”
Stable staffing reduces stress, supports regulation, and allows both brothers to continue building skills. When staff turnover is high, those gains are often lost. Proposed cuts to self-directed staff wages threaten that stability and would have serious consequences for Benjamin and Jacob.
“That would be devastating to them and to us as a family,” Kim says. Lower wages would make it impossible to retain the caregivers who know the brothers best, forcing families into more restrictive or less appropriate options.
There is also an important cost consideration. While Benjamin attends a community program a few days a week by choice, those services cost significantly more per hour than self-directed supports. Self-direction allows public dollars to be used intentionally, funding only the supports the brothers actually need.
At its core, self-direction gives Benjamin and Jacob what everyone deserves: choice, dignity, and the ability to live days that feel meaningful. “The freedom that self-direction gives my boys is what we all long for as people,” Kim says. “To make our own choices about how we spend our days and who we spend them with.”