SOS: Surviving Our Storms
Brunswick, Georgia (Senate District 3)
There are times in life when it just feels like storm after storm, wave after wave, keeps hitting you. You don’t have time to catch your breath before the next one comes. For Cameron Taharka’s family, living in coastal Georgia and enduring one hurricane after another can sometimes feel that way. On a deeper level, though, enduring the storms that come from living with a medically fragile person makes life even more unpredictable.
(Story continues below after slideshow.)
Cameron is a 29-year-old man with an intellectual/developmental disability (I/DD), quadriplegia, cerebral palsy and scoliosis. He lives in Savannah, Georgia. When Cameron’s mother, Tanet, went into labor five weeks early, she was not entirely surprised. Doctors had detected at her ultrasound four weeks earlier that Cameron likely had some sort of developmental anomaly. At the time, they suspected hydrocephaly. That’s as prepared as Tanet was.
When he was born, Cameron weighed 5 pounds 3 ounces, so he only had to stay in the neonatal intensive care unit (NICU) 10 days. At the time, doctors didn’t see any of the issues previously predicted; Cameron was simply premature. Eventually, however, he was given the diagnosis of cerebral palsy. Although they saw a genetic specialist, no genetic answers were found.
Once it was established that Cameron was struggling, he was only given three months to live, perhaps a year. Cameron’s pediatrician was a polio survivor herself, who now specialized in disability. She said to Tanet, “If there’s something I don’t know the answer to, I will find it.” Tanet saw how the pediatrician identified and empathized with her patients. In fact, Tanet started scheduling Cameron’s appointments at the end of the day because they took so long, and she didn’t want to run over other people’s time. That doctor took care of Cameron until he aged out of pediatric care.
It didn’t take long to figure out that Cameron’s care was going to be unrelentingly expensive. They got him on the Katie Beckett waiver, which provided extra support to Tanet’s insurance when he was younger. Regardless of how many jobs she worked, Tanet was never going to be able to provide enough insurance for Cameron on her own. Cameron had several incidents of being in the intensive care unit (ICU) for more than a week. Katie Beckett was very helpful during those times. He then moved from Katie Beckett to GAPP, the Georgia Pediatric Program, which provided nursing assistance. It helped them get a registered nurse (RN) or a licensed practical nurse (LPN) for up to 40 hours per week and also provided respite care.
Eventually, Tanet understood that it was time to begin applying for the Medicaid waiver. GAPP would end and potentially was not going to be enough in the meantime. She kept sending in the paperwork—full binders of information—and never heard back. Finally, she heard from the office that she didn’t have to keep applying because Cameron was on the waiting list. She laughs, “When I started applying for the Medicaid waiver for Cameron, people were like, 'Please don’t send me any more applications. We received everything you sent.'” How many times did she send in those thick binders? “I think maybe four.” She would include a picture of Cameron in the front sleeve. “He can’t speak, but you’re going to see him,” Tanet says, fervently, "and this is his story.”
When Tanet finally connected with her state senator over the fact that Cameron’s applications were languishing, the legislator said, “Tanet, I’m so offended.” She was offended because she didn’t know what Cameron needed and couldn’t until Tanet told her so. Tanet indicated she was unaware she would have to call her state senator to make the application go through. The two wound up bonding because the state senator also had a family member with a disability. Tanet reflects, however, that it really should not have required forming a relationship with a legislator just to make the application move forward.
Cameron was finally approved for his Comprehensive Supports (COMP) waiver in 2007 after applying four times over the course of three years. It came just as he graduated from high school. Cameron’s waiver pays for specialized medical supplies. It also pays for staff support to take him out into the community, also known as a Community Access Individual (CAI). He gets 40 hours per week of support. They also have a management company that takes care of all the management and paychecks for their staffing. The company, Acumen, is paid for by the Medicaid waiver. Fortunately, he is not currently having to do any regular physical therapies.
Although he had significant seizure activity (including grand mal seizures) when he was younger, Cameron has had none in the last 10 years. More recently, he’s had extensive hospital stays where they tried different medications that led to some reactions, including tremors and petit mal seizures.
On a typical Tuesday in spring like this one, Cameron loves getting out into the community. He goes with his caregiver down to River Street, the beautiful squares and parks in downtown Savannah. He likes to get Icees and peach Fantas – those are his “cheat treats.” They meet up with other people with I/DD, their parents, and caregivers. Cameron can get out a lot more after spring is over due to his seasonal allergies. When there’s a lot of pollen in the air, it’s hard on his lungs and breathing.
Cameron is on continuous nutrition and hydration via a gastrostomy tube, or G-tube. He can still take some food by mouth if it’s pureed (hence, his love of icees). Everyone in the house (Tanet; her mom, Fredrica; and her husband, Larry) is able to work with the G-tube. They do not currently have any nursing support services, and Tanet attributes that to the particulars of Cameron’s care. “You would be surprised the ones that don’t want to handle the feeding tube apparatus,” she says.
He also loves going to the barbershop, where he has his favorite barber, Charles, or “Chili.” About five years ago, Tanet got all of her hair cut off in honor of a friend’s cancer diagnosis. As a result of the haircut, she sought out a new barber, which ultimately led to a chance meeting with her future husband. Now they all go to the barbershop together, and, as Tanet says, “it’s truly a family affair.”
The family have a wheelchair lift on their vehicle, provided by the Fragile Kids Foundation. They found out about that and other resources through their support coordinator. They also got a van through the Big Hope Foundation, which matches people up with equipment needs. Another family whose person with a disability had passed away donated it to the equipment bank near the same time Cameron’s family had the need. Big Hope even paid to transport the van from Michigan. Since receiving their van, Tanet was able to help another family get a brand-new van after hearing their plea on a call-in radio program. Tanet says she feels like the fact that she just happened to be listening to the radio when the family called in to talk about their plight was divine intervention.
If given the chance to speak with legislators about their experience, Tanet would say that anyone who represents her should have to come follow her—pick one day, pick an hour, and you’ll see. “We’ve been fortunate to have elected officials here in our area we can reach out to,” she says. “When Cameron first started the process to try for resources, we just didn’t know.”
One of the best things that happened is that Tanet found and got involved with the Georgia Council on Developmental Disabilities (GCDD), especially the Parent Leadership Support Program. Even though it was a huge commitment, traveling to Atlanta weekly over eight weeks to complete the program, Tanet felt like it was an opportunity to find out what resources were available in their part of the state. When she participated in 2008, Cameron had not graduated from high school. Tanet was able to find out how to advocate for him. She reflects, “You would think administrators and such would already be thinking, 'Let’s do what’s best for him and let’s make this happen!' Sometimes, with all the paperwork and everything they have to do, things get missed.” She went from participating in the program to meeting with other parents, caretakers, and guardians and participating in advocacy at Disability Day and other events at the state Capitol. In turn, she was able to tell other parents in their area who were not able to travel from Savannah for a 6-8-week program what she had learned.
It was an interesting experience for Tanet because some of the other parents from Atlanta were attorneys. They talked about the importance of advocacy and education regarding the laws pertaining to special education and the Medicaid waiver process in Georgia. Tanet was surprised because it seemed as though children in metro Atlanta had access to more resources than the residents of more outlying parts of the state. The level of access to state resources should be balanced and accessible for those in need throughout the state. Voices are being heard, and the forgotten now feel more included in the dialogue. “Our stories matter,” she says.
Even though there is a positive shift for supports in the community, Tanet speaks with great concern about how hard it is to find and maintain staff support, even through the waiver. “With the waiver, potential staff want to go with the participant who has the most hours. That’s the most money for them.” They faced a similar predicament previously under the GAPP program, though then it was just with nursing support.
* * * * * *
It’s now early December, seven months later. Some big changes have happened for Cameron and his family. They have moved to Brunswick, another coastal city in Georgia, so Tanet could take a job as assistant city manager. It has been an exciting opportunity for the entire family. Cameron loves his new city and home.
Despite the recent move and new home front, storms will still come. A couple of months ago, Cameron was hospitalized and treated with IV antibiotics. It was one of many precarious times in his life, but as Tanet reflects, he’s been given so many early death sentences—he just keeps blowing past everyone’s expectations.
They’ve endured another hurricane season as well although this one was better than the last. 2018 was a notoriously hard year for the coast, with two particularly strong storms that tore through, destroying many impoverished communities. The storms also made celebrating Cameron's and his stepfather’s birthdays in September a washout. This year, Hurricane Dorian was right before Cameron's birthday, but they were all together. And this year, unpredictable like every other, being together is the thing for which they are most grateful. For so many reasons.
Writer: Shannon Turner, Photographer: Lynsey Weatherspoon