Columbus, Georgia (Senate District 29)
It’s Friday afternoon at Chattahoochee Scuba in Columbus, Georgia. Kaylee and Micah Asante are getting suited up, not for scuba lessons, but rather for swimming instruction and therapy. Kaylee, 10, and Micah, 16, both have autism. Jo Durst, who was recommended to them by Family Support at New Horizons Behavioral Health, slips into the pool and starts distributing toys to use during the session. “Are you ready? Are we going? Ready! Set! Swim!”
Dorothy Asante adopted Kaylee and Micah after fostering them from different families. They have two other siblings as well. One is 25, and the other is Micah’s twin sister. Their autism is suspected to be a result, at least in part, from fetal alcohol syndrome. In Micah’s case, testing at the Marcus Autism Center revealed a deletion of the short arm of chromosome 16. Dorothy says that both Kaylee and Micah need speech therapy, but obtaining timely and needed services has been one of her greatest struggles with the school system.
Micah and his twin sister, Michelle, first came to live with Dorothy when they were just a few months old. That first time, she had them until they were three. Then, the courts decided to move them to another state to live with distant family members. Because they suffered some trauma in that situation, the family returned them to the child protective services system and Dorothy took Micah and Michelle back in. Dorothy adopted them soon thereafter. A few years later, Kaylee came to live with them when she was a baby and was adopted into family early on.
The Asantes have been on the waiting list for Medicaid waivers since 2012. Dorothy is very grateful that a case worker at New Horizons walked her through the process of making the application, so it was less complicated than many others have experienced. Kaylee was moved to the short-term waiting list in 2017; Micah moved in 2018. Dorothy was diagnosed with a blood clot in her leg not long before the family was in a car accident in September this year. She’s been told that this change in their circumstance may help to move the children up the waitlist, but no change has been communicated so far.
In the meantime, although there is a low cap on it, the family support program at New Horizons offers funding for similar services to what they might receive from a Medicaid waiver. It makes today’s swim lesson possible. Dorothy says that it’s helpful, but she still has to pay out-of-pocket on a lot of things that would promote their independence because the cap on eligible expenses is $3,000 per child. Dorothy speaks passionately about what the waiver could do with them in terms of further supports and stability. “I know what they need,” she says, “I just can’t do it by myself.”
Micah and Kaylee receive Medicaid, and they also have Adoption Assistance available to them for things that Medicaid may not cover. They go through those funds swiftly every year. Micah has braces now, for which Dorothy had to pay the first four months of payments before they were covered. The kids are also being seen by a therapist who does not take Medicaid. Dorothy says the kids are familiar with that therapist. She’s successful with them. So, as their mom, she wants to keep them there.
If given the opportunity to speak to a legislator, Dorothy says she would say, “Our lives are not easy. It really is hard when you’re dealing with kids that have developmental disabilities, and it’s important to really get them the help they need at the beginning, instead of the middle. In the middle it helps, but they need so much more.” She goes on to speak about the importance of a good foundation and the parallels between investing early in support for a person with a disability and the education system more broadly. Dorothy also states how strongly she feels about having her children participate in a general classroom because then they will be held accountable for their behavior by the same standards, rather than being coddled or excused because they’ve been deemed to have exceptional needs.
As the swim lesson wraps up, Kaylee goes through a routine Dorothy says has become standard. She gets everyone to cheer her on so she’ll jump in. “Are you gonna do it?” Dorothy encourages, “Who’s my big girl? You’re doing great!” Eventually, everyone rallying as if it is for an Olympic gold medal, Kaylee jumps into Jo’s waiting arms. Hopefully, with an even more robust network of supports, Kaylee and Micah will be able to continue to grow and thrive, jumping into more opportunity that awaits them.