GCDD IMPACT: Am I Gonna Be Stuck With You?
Fridays are Robin Wilson's favorite days. She gets to work at FurKids, the largest cage-free, no-kill shelter in the Southeast for rescued cats and dogs. Robin walks dogs, does laundry used in the care of the rescued animals, and prepares kits that are sent home with every new adoption.
Her work at FurKids is supported by her job coach, Beverly Anderson, who Robin's mom says "is more like a life coach."
Robin is a 32-year-old woman diagnosed with Williams syndrome, a developmental disorder characterized by mild to moderate intellectual disability or learning problems, unique personality characteristics, distinctive facial features and cardiovascular problems. However, Robin has no cardiac issues, and her family is thankful every day for her healthy heart. Robin also has some OCD and a severe peanut allergy, which has limited her ability to participate in some public events, such as sporting events, as she'd like to. Her mom, Jody, explains that people tend to throw peanut shells on the ground. Robin picks anything up she sees, and a peanut shell could throw her into anaphylactic shock quickly.
When asked what Robin likes about FurKids, she enthusiastically says, "They [the staff and volunteers] are nice, sweet and work very hard."
She calls preparing the adoption kits "doing the baggies" and shares that she does a good job. Each bag contains shampoo, conditioner, snacks, a brush, and instructions - items donated by a pet supply line by Paul Mitchell.
Julia Galotti, FurKids staff member who runs the front desk, says Robin is a big help to the team. "It just makes so much sense and it's so helpful," she says. "We'd probably be running to the back ourselves to throw those kits together in the middle of the lobby being full on a crazy Saturday morning when everyone comes in to adopt."
FurKids has other volunteers with developmental disabilities besides Robin, including a whole class of youth with disabilities from Eaton Academy who help walk the dogs.
Robin has been on the COMP Medicaid waiver since she was 20 years old. She'd been on the waiting list for two years at that point. Her mom, Jody, says that being on the waiting list was one of the hardest periods of their lives.
She called their administrator every day to keep them at the top of his list. Most of the time, he didn't answer, but she left messages for him. He would tell her that he had to make notes every time she called. When Robin got ill and needed surgery, it bumped them to top of the list immediately.
Jody says, "It's sad that sometimes people have to wait until they are 75. It's really unfortunate that's what it took."
Robin lives half-time with her mom and the other with her grandmother, Sandy, affectionately called "Nanny," and Nanny's dog, Gilbert. This situation is working out very well for them since her grandfather passed away about a year ago.
"Robin is very helpful in a lot of ways," her mom says. As if right on cue, Robin begins by demonstrating how to make coffee or hot chocolate on the Keurig. She also makes sure to put ice in her own cup "because I don't want to burn myself."
The Medicaid waiver has supported Robin and, by extension, them as a family. "The whole reason Robin has continued to grow and learn is because of the waiver."
Jody speaks about how Beverly in particular has made such a difference in Robin's life. Her skills do not change overnight, but every six months or so she notices Robin is learning new things.
"I never thought Robin would be able to sort her laundry, put it in the wash. She has three grown brothers, and if I tell her Michael put a red shirt in with his white towels and everything's pink, she'll get hysterical laughing. 'You're not supposed to do that! You do not put anything in with the whites!'"
Jody says that there are a few things about the waiver she'd like people to know. She has goals for her daughter, and she and Beverly meet about those goals. But, as she says, "Imagine being 32, and your mother's still telling you what to do. She doesn't want to hear it from me."
There was a time in Robin's late teens and early twenties when that struggle became really painful for the both of them. One day, as they were disagreeing with each other, Robin wanted a Diet Coke, something which is actually hard on her digestive system, and she opened the car door to leave. They had stopped at an intersection but Jody had just started to accelerate. It scared Jody a lot. She called the administrator again that day and added the incident to the file. It wasn't long after that her surgery came into play, and things changed. When we ask Robin if she remembers that time, she says, "Yes," very quietly, and how she feels about that time, she says, "Sad."
Beverly has been Robin's job coach and assistant caregiver for five years. "How does it feel to have Beverly in your life to help you do things?" we ask Robin. "Good!" She tells us enthusiastically about their plans to go to the grocery store and get ingredients to make taco salad. "We're gonna start about five," she tells us.
Both Jody and Robin had to go through an adjustment when the Medicaid waiver helped them start to separate a little. "I had to turn her over to another person. And, there's a big difference. She was done with me. I kind of got that."
They recently decided to transition to the Self-Direct version of the COMP waiver, which is working out very well. With 35 hours a week of support, and 20 nights per year of respite care, they frequently convert respite care into day shifts. Medicaid is supposed to pay Robin's medical bills, but none of her doctors actually take it. For instance, she had to battle with Medicaid to pay for the life-saving EpiPen she has to keep on her at all times for her peanut allergy.
Robin attends a day program four days a week. Jody's not terribly happy with it and says Robin is "stagnating there." She'd like to find a better situation, but she feels stuck because of the limited funds through the waiver. It's currently the only viable option with their allotment. Fridays at FurKids, then hanging out with Beverly is a first step toward more fulfillment.
She is also a wonderful painter, and has won awards and given presentations about them. She's also a great bowler, though she has to use a ball with no holes in it because her fingers are not strong enough. Every night, she gets up at dinner and gives a little speech about all the people whom she's thankful for in her life.
And her desire to communicate sometimes gets her in trouble. She recently figured out how to use her grandmother's Amazon Echo Dot and called her brother while he was on a date, even though she'd been told not to bother him. Mom says, "None of us knew that was it was possible to make a phone call that way. She had never seen us make a call using the Dot, and we couldn't figure out who she was talking to in her room." Since the call came up as "Nanny," he thought something was wrong. They had a good laugh, and of course he didn't mind talking to his sister for a few minutes.
One of the great things about the timing of Robin's waiver is that it came right when her younger brother, Michael, was leaving for college. His transition got Robin thinking about her future. She had started asking a lot of questions about what was next for her life. Sometimes she would ask her mom, "Am I gonna be stuck with you now?"
That's a question that has come to mean many things over the course of her life. At first it meant, "Do I have to sit through my brother's baseball practice because there's nothing else for me to do?" to more recently "Do I have anyone working with me this weekend or am I stuck with you?" and even more broadly, "What will happen to me as we both get much older?"
What will happen to Robin when they both get much older is still a question. For now, she seems to have settled into a happy rhythm of sharing time between mom, grandma, work and fixing taco salads for all her company.
GCDD Storytelling Project
This feature is a part of Georgia Council on Developmental Disabilities (GCDD) Storytelling Project. The goal is to collect 75 stories representing the experience of individuals living with a developmental disability in Georgia. These stories, accompanied by 6-12 representative photographs, will be instrumental in the efforts of GCDD to advocate for Georgians living with disabilities.
Writer: Shannon Turner
Photographer: Lynsey Witherspoon
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