Luke Arduino

Atlanta, Georgia (Senate District 42)

Luke Arduino is looking for a job. Not just any job. The right job. If it could be any job, it would probably be something that involves talking about books. He wants to help people who love to read as much as he does figure out what they should read next. And why not? In a world of niches, where most people are allowed to explore their unique passions, Luke’s dream feels like it should be very possible.

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Except for all the boxes people want to put him in. He wouldn’t mind it so bad if those boxes were full of books!

Luke is a 31-year-old man with cerebral palsy who lives in Atlanta, Georgia. Luke has a college degree in English. He and his direct support provider (DSP), John Watkins, work together weekly doing everything from going to the gym to taking walks to looking for jobs that Luke might want to do while sitting and enjoying their favorite local coffee shop, Kavarna. 

As he’s trying to augment his resumé, Luke is learning Canva (an online graphic design software) and volunteering to do graphic design for local businesses and nonprofit organizations in order to get his foot in the door. This volunteer work seems much more fun than the job at Kroger bagging groceries he’s been offered. (Not that there’s anything wrong with that job. It’s just that it’s not quite the right fit for him. It feels like one of those limiting boxes.) Luke’s mom, Susan, describes it like this: “So he graduates, he does this program in the library. And then we're like, ‘Okay, how are you going to get around?’ And then we hit this cliff. He has no way to drive and there's no public transportation .We only had Voc Rehab.”

One thing that doesn’t help the situation is that Luke is currently on the waitlist for the Medicaid waiver. The only funding he has to support his efforts to live and work independently are through Vocational Rehab and the Bobby Dodd Institute, which resets annually at the beginning of July.

Luke’s time with John Watkins is facilitated by a local nonprofit organization, Together We Care. Jillian Palmiotto, Executive Director, says that Together We Care connected with Luke and his mom when she was looking for some educational resources to keep his mind and learning active. Unfortunately, Luke did not have transportation since both of his parents work full-time. In fact, according to Jillian, “his family had moved to Decatur so he could be closer to public transportation, only to realize that he would need support in learning how to navigate the transportation.” Now, one of the things John works with Luke on a regular basis is coaching him on how to ride MARTA.

John says he absolutelyloves hanging out with Luke, but he also has between 5-7 other clients at anygiven time. There simply is not enough of him to go around. Each one of theserelationships takes skilled, careful tending. He says, “I started out workingwith Luke around 40 hours per week, but that was because they [the family] hadnot used any of his funding. I’ve had to cut back to around 25 hours now. Hisfunding resets in January so I will do around 30 hours then. In all honesty, heneeds support all 40 hours. That’s when we saw the biggest improvement.”

The phenomenon behind Luke and John’s relationship is what many people refer to as “The Caregiver Crisis.” These are skilled labor positions that sometimes require specializations and certifications in everything from dispensing medications to high level emotional intelligence, yet you can do better financially in most parts of the state working in a fast food restaurant than in these intensive (if spiritually rewarding) positions. 

In a recent press release for the Georgia Council on Developmental Disabilities, Executive Director D’Arcy Robb, reflected, “Right now, in the set rate that the Department of Behavioral Health and Developmental Disabilities (DBHDD) is paying providers, the assumed rate that goes to DSPs is $10.63 an hour. That's not enough for anybody to live and support themselves in today's economy.” Robb goes on to state that, “DSPs' vacancy and turnover rates are very high – understandably so. Numerous providers have talked about losing some of their best staff, who come to them and say…’I cannot sustain my life on $10.63 an hour.’”

Another factor tied to these positions and their low wages–not unlike teaching and childcare–is that they tend to be feminized. Susan says, “When Luke was paired with John Watkins, it was also a huge answer to our prayers for support for Luke. It has been nice for Luke to interact with a man, since for most of his life, he has had female support in terms of therapists and teachers.” 

John qualifies the key to the success of his work as the need to “pay attention.” However, he explains, “There’s not enough of me.” By that, he means that there are not enough people like him to work with people like Luke. “But the other thing too,” he says, “is that there are nuances that a person [with disabilities] will exhibit. Unless you spend time with them–quality time, observe them–that you just won't pick upon it. You won't know that there's a need.”

While different people refer to these vital workers in different ways–DSPs, caregivers, staff–John and his colleagues at Together We Care prefer to call his role “facilitator because we help facilitate what they need to work towards–whatever that is.”

One of the ways that John says their relationship is crucial—and Luke agrees, not unironically—is that Luke is highly open to suggestion. He’s very affable and likes to please. He doesn’t always assert himself or what he wants in a situation. John is slowly trying to help draw Luke out, coach him to discern and communicate what he wants. That is something that really improves as their relationship gets deeper. As a metaphor perfect for manifesting it all, Luke has been going to physical therapy recently to strengthen his core and stability, but the PT only pays off if Luke keeps practicing in the real world. John is able to keep gently reminding Luke that when he strengthens his core, he’ll wobble less. And the wobble could look like so many different things, from being put into a job that’s not right for him to getting lost on MARTA to just sitting at home all day with no place to go.

Thank goodness for John. They make a great team.

Writer: Shannon Turner Photographer: Haylee-AnneFucini-Lenkey