Statham, Georgia (Senate District 47)
Gibson Williams is an eight-year-old boy from the Athens area born with single ventricle complex and heterotaxy syndrome, meaning his heart does not have as many chambers as most people, many of his organs are on the opposite side of his body and he was born without a spleen. He had multiple surgeries as an infant, and he also had a stroke and seizures which led to developmental delays.
Gibson has been on the Katie Beckett waiver since he was six months old. His parents explain that the renewal paperwork comes every year and needs to be filled out within two weeks, even though it requires getting several doctors and specialists to complete sections. If it’s not filled out absolutely correctly, you’ll be denied. It’s always a very stressful time in their year. Fortunately, it’s recently become a tiered system, and now that Gibson is in and has demonstrated a certain level of need, he doesn’t require quite as much paperwork for the annual application as he used to.
With training as a licensed clinical social worker, Alison says that she has lots of experience helping other people apply for Medicaid and other government programs, yet applying for the Katie Beckett waiver is still very difficult and time consuming. She now helps other families fill out their applications and paperwork because she’s learned so much about the process. “I know a family that got denied simply because one pediatrician checked one box wrong.” There have been times when she’s discovered she actually knows more about the process than their DFACS worker. (Story continues below after slideshow.)
The Katie Beckett waiver helps with co-pays and deductibles, physical therapy and speech therapy. You have to have primary insurance; the waiver is an add-on. “It’s good,” says Alison, “because we meet our deductible, which is like $3,000, by the end of January typically.” They demonstrate their intricate system for medication organization and distribution in the kitchen, including re-usable oral syringes and envelopes for each day.
As she discusses the difficulties Gibson has encountered, especially when he was a baby, Alison starts to cry. “A couple of times we didn’t know if he was going to survive. It’s hard. And then about a year ago he had a really bad seizure that lasted for 45 minutes. We rushed him to the hospital. He was unresponsive.” Dad, David, chimes in that the incident didn’t seem to have any long-term effect and now Gibson’s on a new medication that helps a lot. He had his last corrective heart surgery when he was five, which meant he had an oxygen saturation level of only 80 out of 100 for all that time.
“We have to go on lockdown in the winter,” Alison says, “because Gibson’s immune system is so delicate.” Gibson is in a special education classroom in the local public school. Just to get him started at the school, they had to meet with the head of the special education department, the principal and the superintendent to go over all of his medical needs. Gibson’s teacher is really good about letting the parents know if anyone becomes sick or displays symptoms. They frequently bleach down the whole room and send people home when they need to. Not having a spleen means that Gibson takes antibiotics and probiotics every day.
If elected officials were brought to Alison and David’s doorstep, they would like tell them: “There’s not a lot of resources. It’s difficult, and it’s expensive. People think, ‘Oh, if you’ve got insurance, it’ll cover everything.’ But not if you’re going to the doctor once a month, you’ve got therapies three times a week, and you need medicine. At one time he was on 14 different medications. One of the co-pays was $200.” David says, “I would like the paths to service to be easier. It’s literally jumping through hoops.”
Alison was only recently able to go back to work full time as Gibson has become more stable. Up to now, he was at the doctor every other week, often at specialists in Atlanta, which is an hour and a half away, not to mention the weekly therapies.
Alison gets a little emotional about it again because it seems, after the more recent seizure, Gibson’s future feels uncertain. They’ve only begun to think about a possible scenario of what will happen for Gibson if he outlives them. They imagine his sisters will be involved in his care. “Fortunately, [one of his sisters] Loralie is going to be an astronaut,” Alison laughs through her tears.
Writer: Shannon Turner, Photographer: Lynsey Weatherspoon