Because Magnolia Means Dignity
Tucker, Georgia (Senate District 41)
Evan is a 33-year-old man with Down syndrome. He is supported by the Independent Care Waiver Program, which provides support for his living situation, as well as a job coach.
Evan’s parents were able to buy the 1950s-era home he lives in about three years ago. He has two other roommates who also have developmental disabilities.
Now the house is called Twin Magnolias because there are two of the majestic trees in the front yard, and the name for the magnolia flower means “dignity.” “That says it all, I think,” reflects Jane, Evan’s mom.
Evan first applied for his Medicaid waiver when he was in high school, where he had a transition coordinator working with him. She suggested that he go after the waivers as soon as he graduated. His parents just kept on it. They were told, “If you hit them at the right time, when they have funds, then you’re able to get them.” Even though they’re all the same age, his two roommates have only recently gotten waivers. When he first got it, he had a social worker who came out and did a full interview with a scale for his qualification for the waiver, and he has to re-apply every year, but he’s had it for about 10 years now. (Story continues below after slideshow.)
We asked Jane what Evan’s life would be like, and theirs, if he didn’t have the waiver. She explains, “When we got him into a housing situation, I had this freedom I didn’t know what to do with. I had to reorganize my life because I’ve never had that kind of freedom. In some ways, it was very scary. My life had been dedicated to him and his needs.” She explains how they were also thinking of Evan’s siblings and what it would mean for them in the long-term. “Part of the reason we did this was so they wouldn’t feel the burden of what would happen if anything happens to us,” Jane explains. Evan is in a situation that’s very successful and sustainable in the long-term. When Brian, Evan’s dad, and Jane are elderly and at the point when they can’t handle managing Twin Magnolias anymore, [and] can’t do self-direct, they will look for an agency to come in and do this for them. “I don’t think people realize what it means to have that gift of freedom for Evan and for me,” Jane muses.
For a while, Evan’s parents had moved him up to Dunwoody so he could be closer to his job at Scottish Rite Hospital stocking shelves for the ER. They thought he would enjoy a shorter commute. What they didn’t anticipate was how much he would miss his community and all he loved about Tucker.
Evan’s parents live just three miles away, and they are very glad to have come up with this creative solution together. On this Saturday when we came to visit, they were there to work on weekend chores, such as fixing and restoring a couch leg which had come loose, going for a haircut and doing laundry.
Riley, Evan’s job coach, is by far the best one he’s had so far. According to Evan’s mom, Jane, Riley sets goals for him, helps him stay on task, and accompanies him to reviews with the Scottish Rite staff in order to advocate for him.
Similarly, we asked Jane what would happen if Evan didn’t have a job coach or a job. She replied, “Evan loves to work, and we want him to work. He would regress cognitively and physically. There are things you can find in the community to do – shopping and working out – but working benefits his self-esteem. It’s a big plus for him.” For employers, the job coach is really important because they don’t have to deal with parents. “If my son’s not performing the job, they can talk about that. What needs to be done.” Jane says Briggs, a provider of supported employment services, is very good at carving out job niches for people with disabilities in many sectors. “It’s not just bagging groceries anymore – that’s the stereotype. It’s changed from that. There’s a lot more opportunity that match with people’s interests. Good job coaching groups look at what do you really want to do.”
Evan is also able to work out at the gym while he’s at the hospital, and a personal trainer (paid for privately by his parents) comes on Sundays to take Evan to exercise one-on-one. He loves to lift weights, but he doesn’t really know how much he can lift. “That’s up to my trainer,” he says, “I just lift what my trainer tells me to lift.”
Proudly posing next to a flag on the front porch his grandmother gave him when he moved into the house, Evan explains to us that his grandfather fought in Vietnam. Jane offers additionally that, when Evan got to go to D.C. with the Jewish Community Center, the group did a surprise side trip to Arlington Cemetery so Evan could see where both his grandfather and great-grandfather are buried. “Evan was so proud!” she beams.
Writer: Shannon Turner, Photographer: Haylee Fucini-Lenkey