Background
Brad is a middle-aged man who lives in Kansas. He enjoys supporting his home teams at sports events and getting lost in a good mystery novel. Since 2019, Brad has worked at the Kansas University Center on Disability as a researcher. He comes to this work after a long history of advocacy work at the local, state, and national levels.
What’s Important
Brad’s first job was at a sheltered workshop. However, Brad wanted to work in the community, so he worked with a job coach to explore other potential job opportunities. “I had a pretty good idea of what I wanted to do,” he said. “I just needed to find the right spot to get started.”
One of Bra
d’s early community-based jobs was a year-long position with the Census Bureau, checking time sheets. He enjoyed this job despite a complicated commute, which later improved when a coworker offered to carpool. He then volunteered as a counselor, supporting other people with disabilities in building life skills and self-determination, where he was nationally recognized for his efforts by Points of Light and received an award from President George W. Bush. Brad then joined the Self-Advocacy Coalition of Kansas (SACK), where his work involved traveling across the state to present and support advocacy work. His growing interest in research led him to join SARTAC in 2016, contributing to accessible resources for self-advocates. Then in 2019, Brad accepted a new role as an assistant researcher at the Kansas University Center on Disability (KUCD)—blending his advocacy experience with research.
Brad self-directs his home and transportation services through the Work Program—a Medicaid waiver initiative in Kansas that he helped launch in 2007. Brad owns his own vehicle and uses some of the waiver funds to pay someone to drive him. He hires his support staff through an agency, and a fiscal intermediary handles payments and record-keeping. As Brad noted, “When it comes to hiring, I still conduct the interviews, but I’ve found that it works better for me to go through an agency that already employs attendants.” He has a needs assessment twice a year to ensure his supports remain adequate.
While self-direction offers flexibility and control, finding reliable and consistent support can be challenging. Brad shared that finding consistent support is easier during the school year, when college students often sign up with the agency to work. Self-direction also allows Brad to hire a primary supporter, a long-time friend who works nearby, to assist with at-home supports, transportation, and medical appointments as needed.
What Happened
Brad has now worked as a researcher with KUCD for six years. After working full-time for many years, Brad now works part-time to free up time for other things.
The Work Program provides Brad funding for self-directed supports, including transportation to work and other destinations as well as in-home assistance with personal care and getting ready for work. Brad plans to continue working and staying involved in both research and advocacy. Brad also hopes to travel more, attend sports events, read more books, and pursue opportunities for paid public speaking. “To tell you the truth, over the last 20 years, I’ve accumulated a lot of material that I could use to talk about my experience living with a disability,” he says. “So that’s the next thing on my docket.” Self-direction gives Brad the flexibility and supports he needs to pursue these goals on his own terms—from choosing who helps him at home or at work, to making decisions that align with his priorities.
Lessons Learned:
Self-direction supports independence and choice. Choosing who provides support, when it happens, and in which areas of life—home, work, or community—allows people to shape services around their unique needs and preferences. This level of choice empowers individuals to live more autonomously.
Self-directed services allow people to use trusted personal relationships to build stronger support networks. A key benefit of self-direction is the ability to choose supporters you know and trust. Brad’s decision to hire a long-time friend as his primary support person shows the value of leveraging personal relationships for consistent support. These connections often lead to more dependable and personalized care.
Self-direction allows for creative use of resources. Through self-direction, individuals can combine different types of support—like waiver funding and employer-provided assistance—to build a personalized support system. Brad’s experience shows how blending formal and informal resources can help fill gaps and ensure support is available where it’s needed most.