Just Keep Swimming
Avondale Estates, Georgia (Senate District 42)
Mae Rosen has had a “good Friday.” By the time we arrive at 5 p.m., she’s been to her work program and come home to hang out with Dad. After we arrive, Mae’s going to do her favorite thing: swimming. “Then we’re having my favorite dinner, which is Jimmy John’s! I know that’s really ‘carb-y,’ but it’s just good.”
Mae is a 24-year-old woman who has a very rare genetic disorder called Trisomy 8-Monosomy 21, which causes intellectual disability along with some other co-occurring diagnoses. Her first cousin and now her sister are symptomatic as well.
For the last two years, Mae has been going to WOW In Sync, which is a job-training program based in Tucker. Its mission is to “support adults with developmental disabilities through training and mentorship so they can be empowered to pursue their passions in work and life.”
Mae’s dad, Bob says, “They do a lot of things like checking your dexterity, checking what your strengths are, in a range of things they do there.” Mae goes to WOW three days a week for about five to six hours a day. Mae has a job coach named Miss Tanika, who has taken her to many different sites such as Books for Africa, Hope Store and the St. Vincent DePaul Store. (Story continues below after slideshow.)
When we ask Bob about Mae’s current status with the Medicaid Waiver Program, he says, with some disappointment and frustration, “We’re on the shortlist for life.” They’ve been waiting since Mae was 18. When we ask Bob to tell us what that feels like, he says, “It’s embarrassing is what it is. When the law said we need to place people in the least restrictive environment, and we took away all the facilities, they didn’t replace it with anything really.” Bob goes on to discuss the nearly 10,000 people on Georgia’s waitlist for these types of services. “To me that’s embarrassing that a state as wealthy as Georgia places so little emphasis on its individuals with disabilities.”
Mae’s participation in the job training program is paid for by state funds. The problem with that scenario is that their planning list administrator says they are locked into Mae’s current training program, even though they’re not terribly happy with it. She has to literally ‘stick with the program’ in order to access the little funding she receives. Participating in it helps to demonstrate the need for a program, even if her parents don’t feel it’s challenging her the way they’d like to if they got to pick something out for her.
On the days she’s not at WOW, Mae attends the Marcus Jewish Center and Emory My Life, her participation in both of which is supported by Vocational Rehab. “While they’re good programs,” Bob says, “they’re really more for social skills and community access. It’s not really preparing her for work the way we need, and it’s not a housing replacement.” Navigating public transportation can be challenging for anyone, but Bob says Mae’s gotten proficient at it. She takes MARTA from her mom’s house to work and arranges rides for herself through MARTA Mobility.
When we ask Bob if Mae’s independent living is going to be hard on him, he says “No, it’s still going to need a lot of supports. That’s what that Medicaid waiver will be for. But I’m running down,” he says wearily. “We have no family that are able to step in, so external supports are critical.”
Mae is getting ready to go to swim practice while her dad talks. Swimming has been a great mental and physical benefit to her. Bob explains that self-regulation was a challenge for Mae when she was young, but they quickly realized that exercise and repetitive physical movement was a great tool.
To that end, we go to watch Mae at the YMCA while her swim coach guides her. Bob looks on through the window from the viewing gallery, along with other parents. All the weariness he expressed earlier in our conversation is still present in the slump of his shoulders, but he also beams with pride in his daughter.
The best part of Mae’s week is definitely her time at the YMCA pool. “What do you like about swimming?” we ask. “It’s wonderful. The water feels good. I don’t like it when it’s too cold, but after I get in, I start to warm up.” Mae’s coach, Beth, greets us with a warm smile. “You want to show them your dive?” she asks, as she gets started. We watch as she enthusiastically and patiently guides her with which strokes to practice up and down the lanes. “What’s your favorite thing about your trainer?” we ask Mae. “She’s really kind.” That’s how Mae describes pretty much everyone. It’s the world she creates around her.
Writer: Shannon Turner, Photographer: Haylee Fucini-Lenkey