What Today Could Be
Atlanta, Georgia (Senate District 38)
On this Saturday morning in Atlanta, Georgia, Asher Abakare and her mom, Edith, are enjoying life at a slower pace. “I am rarely off on Saturday because I work two jobs,” Edith says, “So this is perfect.” Edith is both a cosmetologist and a parent mentor through the Georgia Department of Education at Atlanta City Public Schools. Many Saturdays, Asher has to go to work with her mom, but today they have the morning off.
Asher Abakare, 22, has cerebral palsy, visual impairment and intellectual disability. She has limited support through the Community Care Services Program (CCSP) waiver, but it is not nearly as robust as what a Medicaid waiver would do for her. The waiver does allow a Certified Nursing Assistant (CNA) to come in a few hours a day during the week and every other Saturday, but as Edith says, it’s just not enough. They’ve had a hard time finding people they can trust to leave Asher with, even for the small amount of time they have.
With a full COMP waiver, Edith says Asher could live the full life a young woman who has graduated from high school deserves. “I don’t want her to be boxed into what I think life is. I want her to be able to do things she likes to do. She certainly does not like to go to work with me.” Edith says, with proper funding, Asher would hire an assistant who could get her out into the community. “It’s not good for her – for anybody – to be locked into a life that’s not pleasing for them.” Edith wants Asher to be able to go bowling, go to the park, take in a show, whatever she wants to do with her day. She’s old enough and ready to be independent. Edith says that, on a rare occasion, she gets stuck where she can’t take Asher to work with her, and there’s no one to assist, so she has to miss work. (Story continues below after slideshow.)
Asher has been on the waiting list for a Medicaid waiver since she was three years old. Edith says she calls DBHDD frequently to see where they’re at in the placement. Before, they were always told about how there was a short-term and a long-term waiting list, how they were giving money to those who have the greatest need. A few years ago the two lists were combined, but now Edith says every time she calls they are encouraged to speak to Vocational Rehab about whether her daughter can work before they’ll really talk to her about a waiver. “Working is not fit for her,” says Edith, “And it’s not fit for her to go through that process. Don’t waste money on all these interviews when you could be supplying services.”
Cerebral palsy can be caused by many things but often it’s brought on by lack of oxygen around the time of birth. In Asher’s case, she was born a few days shy of 24 weeks, or in the sixth month of her mother’s pregnancy, which brought on a brain hemorrhage. She was in the hospital for four months after birth. Since that time, she’s had 14 surgeries. Often those procedures were adjustments to her shunt. Fortunately, though, she’s had no hospitalizations and no seizures for eight years.
With an opportunity to speak directly to her legislators, Edith would say, “It’s real life. Everyday life. People think having children with disabilities is about a check. It’s not about a check at all.” Asher did not receive any funding until she was 19 because she had two parents who worked full time. Edith says that she would want her representatives to know that a person can have two parents that work really hard and yet still struggle. “It took a really long time for my husband and I to trust her with anyone else because Asher does not speak, and we never want anything to happen to her. We don’t want her to struggle and be afraid.” At this point, even though she doesn’t want to, Edith starts to get a little emotional. She fights against it because she wants to be strong, but she feels tired and frustrated by a system that won’t listen. “If we could just get something set up for her, then we could save up and get things put away. We want to make sure that a relationship gets built in the community – a community of trust – right now, while we’re still here. We won’t always be here.”
On this bright, beautiful Saturday morning, these two beautiful women are ready to head out and spend some time together. Just like their church community embraces and celebrates them, Edith is still dreaming of the day when her daughter can go out into the rest of the community on her own terms.
Writer: Shannon Turner, Photographer: Haylee Fucini-Lenkey