A Tale of Two States: Missouri vs Georgia
Acworth, Georgia (Senate District 37)
Kelsey Gray moved from St. Louis to Acworth with her mom, dad and 12-year-old sister in November 2015. Kelsey is a 14-year-old student at Awtrey Middle School, where she is in a class with other students with significant disabilities. Kelsey is happy at school, where she takes classes in math, social studies, music and art.
In Missouri, Kelsey went to a school entirely for people with disabilities. At Awtrey, while she is in a class with other students with disabilities, Kelsey also interacts daily with kids who do not have developmental disabilities. They eat lunch and take extracurricular classes together. This is incredibly significant for Kelsey, and her family appreciates it, too. The Grays aren’t in Awtrey’s district, and while it’s a bit of a hike, it’s also worth it. Kids with developmental disabilities learn with kids who do not have them, and they are both enriched by the exposure and resources. Cammie, Kelsey’s mom, and Kelsey’s teacher, Terrell, both agree that visibility and inclusion are key. “You can tell a difference. You don’t get as many stares when you are out because the kids are used to seeing her every day,” Cammie effuses happily.
Kelsey was born with Pallister Killian Mosaic syndrome. She cannot walk or operate a wheelchair. She has seizures and is visually and hearing impaired. Kelsey’s parents and teachers assist her with all her daily living activities. (Story continues below after slideshow.)
When Kelsey’s not at school, Cammie does most of the caregiving. Cammie explains that because of Kelsey’s frequent and unpredictable seizures, she feels like she can’t be far or work a job since she might have to leave at a moment’s notice. Kelsey requires medication, special medical care and supplies and equipment that are costly. Her medication alone costs $900 a month. This winter, the Grays bought a wheelchair-equipped van with a ramp and special safety belts. It cost $30,000, even though it was the most basic one, but they are relieved to have it.
Kelsey’s partially covered under her family’s insurance, but that doesn’t even begin to cover what she needs. A lot of her care and medications are covered by her Katie Beckett Medicaid waiver. Cammie recalls, “She had the Missouri equivalent, Sarah Lopez, when we lived there. It was so easy. Kids are automatically enrolled for the waitlist as soon as their diagnosis is confirmed. We had a case manager walk us through the entire process.”
Cammie wishes it were so easy in Georgia. They had to wait until they moved to reapply, which created an eight-month gap. No one helped them with the process. The psychological developmental assessment is designed for someone who responds with their voice and has more physicality than Kelsey has. Cammie says, “We never had the same point of contact, and they were always saying they couldn’t find the forms we submitted.” The Grays persisted and got the waiver for Kelsey, but it was stressful. They have to renew the waiver this year, like every year, and Cammie is already frustrated with the process, but they need it to care for Kelsey so she has no other option. Cammie says she is “terrified” to undergo the process to transition from the Katie Beckett to the COMP Medicaid waiver. The idea of spending more time on a waitlist and navigating a convoluted and inconsistent application process is daunting.
Kelsey is lying in a special safety bed in the family’s living room. It took awhile to find an affordable rental house with zero steps or stairs, and room is tight. Kelsey’s bed takes up a lot of the space, but here she can be with her family. Kelsey eats meals with her family and has her own room with another special bed that can be tilted and moved. The bed in her room and the one in the living room both have safety rails and panels so she won’t fall out.
Cammie wants a more streamlined process for applying for Medicaid waivers, and she wants more flexibility in deciding how to use the funds, like she did in Missouri. More than anything, Cammie wants a good life for her family, and to know that Kelsey is cared for. Kelsey moves restlessly, but happily, when she sees her mom. Cammie beams down at her and holds her hand. “If I could say one thing to my legislators, I would say that they need to understand what our life is. Then they would understand why we scream for help.”
Writer: Betty Bernard, Photographer: Lynsey Weatherspoon