Communication, Independence, Relationships
Canton, Georgia (Senate District 14)
Chad Roberts is a 26-year-old man with bipolar disorder and autism. His mom, Kellie, started to become aware that Chad was not making eye contact when he was about six months old and took him to a pediatrician to discuss. As so often happens, the doctor told her to stop comparing Chad to his older brother, and said he was fine. Kellie continued to push the matter. Around the time Chad was two, she went to another pediatrician who said he couldn’t give a formal diagnosis but put a pamphlet in her hand and left the room: “17 Signs of Autism.” That was the moment she knew. Chad was referred to the Marcus Autism Center where he received a formal diagnosis. Kellie says that as Chad doesn’t typically use his voice to speak, his Dyanavox communication device has become extremely helpful.
The Roberts’ lives are made possible thanks to the Comprehensive Supports Medicaid Waiver Program (COMP). Kellie opted for the self-direct version of care, meaning she has more freedom to select and manage the people who support them. Reggie Mack serves as Chad’s full-time, live-in support staff. They use his COMP waiver for Community Access-Individual (CAI) services, which helps him get out into the community for grocery shopping, haircuts and other errands. (Story continues below after slideshow.)
Reggie also serves as Chad’s job coach through Briggs & Associates. Kellie says Briggs provides individual and customized employment and truly believes everyone should have access to employment. She self-directs all Chad’s services except supported employment. Along with volunteering in the community, Chad has five jobs totaling sixteen hours per week. He shreds paper for law offices, creates mailers, folds laundry, and cleans office and gym equipment.
Chad takes twenty pills per day, including antipsychotics and mood stabilizers. Kellie shows the pre-packaged bubbles that Medicaid sends. She convinced the state to pay an extra $6 per month for pre-packaged doses because it helps Chad be more independent; he can self-administer his own medication when he’s out. They’re also one month into experimental use of cannabis oil, but are disappointed that it’s not had noticeable results. Chad is still having completely sleepless nights, including last night, which keeps everyone else awake. Kellie has some concern about the extraordinary number of medications Chad has to take, and their long-term impact on his liver. Doctors have said she can choose for him to live in a kind of balance for a number of years, or he can live longer in certain chaos. It’s the kind of decision that makes being a single parent hard because she had to make it by herself.
If given the chance to speak to a legislator, Kellie says she always makes sure to focus on the three most important aspects of Chad’s life: communication, independence, and developing relationships. As such, the Dynavox has clearly made a difference in their lives. However, clear and transparent communication in the systems that support him are also crucial.
Chad is living an extremely independent life, given his circumstances. Kellie continues to build structures and supports around him so that he will continue to thrive. They recently added an extra bedroom onto the house and renovated the kitchen so that one day, when she’s no longer in the picture, other caregivers will be able to step in and manage the day-to-day. She says, “This is Chad’s house. It’s paid for. He just lets us live in it.” She also proudly offers that Chad rides the Cherokee Area Transportation System (CATS) alone. Putting him on the bus by himself the first day was really hard, but she’s gotten used to it over time.
The main thing that keeps Chad independent is his ability to work. Kellie speaks about spending caps on behavioral support and supported employment. Chad receives approximately $10,400 per year for people to support him to go out and work in the community. Yet if he used his Medicaid waiver funds to go to a day program and “just sit around in an isolated, segregated building,” as Kellie puts it, he would receive $17,000 per year. She’s astonished that the system lacks the foresight to pay equitably and incentivize working. Not only that, she has years of documentation on how much better happier Chad is when he has reliable work where he feels confident and familiar with the environment. “We take less money from social security,” says Kellie. “He pays his own taxes. It feels like he’s being discriminated against.”
It’s finally a beautiful fall day after a long week of rain. Chad and Reggie are heading out to go to the YMCA and other places, as they are wont to do on Mondays when Chad doesn’t work. What will Kellie do while they’re gone? Well, remember, no one slept last night ...
Writer: Shannon Turner, Photographer: Haylee Fucini-Lenkey