Mae Rosen has had a “good Friday” when we come to visit. By the time we arrive at 5:00, she’s been to her work program and come home to hang out with dad. They took a little nap, and they look really relaxed. 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” (WOW website). This week, the program launched a new project where they’re making pet supplies and pet clothing. 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 5-6 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, St. Vincent DePaul Store, where she would coach her through tasks such as sorting or looking for clothes hangers.

 

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 wait list 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.”

 

Now that Mae’s sister, Lena, is heading down a similar path towards a long wait for a waiver, there are times when it seems that Bob might be on the brink of despair. “I could end up being 75 years old and still have two girls at home because frankly I can’t afford private pay. Some of the places that we’ve seen that we really like are incredibly expensive. So, we’re really waiting for the waiver to come through.”

 

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 Voc 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 Mae if she’d like to get out and live on her own, she says she’d love to have her own apartment nearby in Avondale Estates, maybe with a roommate. She’d like to cook for herself and she’d love to be able to sleep late a lot. She would keep going to the Y where she’s been a member her whole life.

 

Mae’s parents have been divorced since 2002. She and her sister go back and forth between their two homes just 1.5 miles away pretty fluidly, but Mae primarily lives with her mom now. She lived with her dad for the previous five years, but they decided to make this move just last fall because it was time to work on more independence training: “That’s not my strength,” Bob freely admits. “I’m more of a caretaker.”

 

When we ask Bob if that means 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.”

 

Currently in the middle of a medications change, Mae is dealing with some anxiety. She encounters repetitive, recurring thoughts which get in the way of her day-to-day at times. It takes a lot of mental energy. Her medications have also brought about some weight gain, which is why she talks a lot about whether food is healthy or “carb-y”. She’d doing her level best not to let the medication ruin her metabolism.

 

If we brought a government official to Mae’s house to talk to her, the first thing she would tell them is, “that I’m happy and kind.” The most important thing to Mae is her family and “having a good life, worry free.”

 

Dad says, “Sometimes I have mixed feelings about all this because I think back to the origins of our country. Family and community took care of themselves, except, I guess, there were asylums for people who couldn’t function. There’s an element in me that’s pretty independent, and I think in general that we need to take care of our family members. I also think that there’s a middle ground where the supports that are necessary to help someone live independently or semi-independently, especially when there’s no more family left, I think that’s really a critical piece. I know why our legislators avoid dealing with it. It costs money; it takes money away from other things that there’s louder voices calling for. Highways, another runway, there’s no end to things. We have a very large, but spread out, population of adults with learning and intellectual disabilities, and not great services for them. I just feel bad that’s not a bigger priority.”

 

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. Regulation is anything that implies an effort to modify or control the intensity of emotional reaction such as anxiety. Swimming is great, but even moving a pile of wood in the backyard helps.

 

To that end, we go to watch Mae at the YMCA while her swim coach guides her through what kind of strokes she wants her to practice. 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.