Meet the Jenkins family: Frank, Cindi, and their two daughters, Jené,19, and Jayme, 12. They live in Harlem, GA, with their three cats and two dogs.
Frank drives trucks currently, but served in the Army before moving to Georgia in 1995. Cindi works at JC Penney in Augusta. Jené is engaged to be married, while Jayme makes the honor roll at her middle school.
Life seems ordinary for this family; however, a big part is missing, as they will tell you. Cindi will say it’s her heart that is missing. Jason, their first-born and the girls’ older brother, lives thirty minutes away from his family at East Central Regional Hospital on the Gracewood Campus. Jason, who is 23, has lived at Gracewood for the past nine years.
Cindi recalls Jason’s placement as the hardest day of her life. Her daughters, four and ten years old at the time, “cried and asked me why I gave their brother away,” Cindi says, beginning to cry herself. “If we’d been able to get some kind of respite, we’d never have taken him [to Gracewood],” she emphasizes.
Jason, who the family has nicknamed “Bubba,” had a traumatic birth that required an emergency caesarean section. “The cord had prolapsed and Jason was coming breech so he came down on top of the cord with his feet cutting the oxygen off,” Cindi says. Jason was flown to a hospital two hours from where Frank and Cindi were stationed andHe’s my kid stayed for 48 days. He received a gastronomy tube for feeding and underwent numerous tests. “We were told he had severe brain damage and that he would never be anything more than a vegetable. We should consider putting him in an institution,” Cindi remembers. But they didn’t. Not then.
Jené doesn’t seem to mind at this point. She says she wants to get her brother out of Gracewood, and promises to take care of him if something happens to their parents. “Both of my girls have big hearts,” Cindi says, and she believes it comes from having a brother like Jason. Or maybe it comes from having such a loving, supportive family.
Jené remembers having a baby doll when she was younger that had a feeding tube in its stomach. Frank says he had to cut a hole in the doll’s stomach for Jené, so her doll would be like her brother.
Cindi and Frank with their son, Jason. “God gave us this boy,” Cindi says, her eyes filling with tears. “[It] hurts me that we’re not the ones that get to care for him.”
The Jenkins moved to Hawaii in 1988 where Frank was stationed for four years. Cindi says Hawaii was the best place for Jason to live. “There the special education was top-notch and we met a dedicated teacher. Between our continuous persistence and hers, Jason began to walk. He was nine years old,” Cindi says. After Hawaii, the family moved to Oklahoma, and Jason received therapy services there, too. Once Frank left the Army and moved to Georgia, Jason was approaching puberty and life for the family turned upside down. “When he hit puberty, he all of a sudden got so violent.” Cindi says. “He would fight when I was trying to put him in his wheelchair for school. He started being aggressive towards others. He would pull hair or tear clothing,” she adds.
They needed help and they weren’t getting any. Respite care to support the family was not available, and it was getting harder to keep up with Jason’s supplies. They received $300 to $400 a month from Supplemental Security Income, but were spending $100 a week for his diapers.
Frank’s uncle had told them about Gracewood, located near Augusta, and suggested they put Jason there. “We said never. But that day Jason grabbed me, never came. I was scared that if that had been our youngest child he had grabbed that he would have broken bones in her face. I took Jason to Gracewood. It was the hardest thing I have ever done in my life,” Cindi says. “I cried the whole time I was there and all the way home.”
Jason had become strong enough to overpower his mom. The wake-up call for Cindi and Frank occurred when Cindi was changing Jason and Jason grabbed Cindi’s hair, pulling her on top of him, which frightened Jason. He threw up his knee to protect himself, which connected with his mother’s face and eye, resulting in a large bruise.
Frank and Cindi were afraid Jason might unintentionally hurt their daughters and they were unable to locate any in-home support. “If we would have had any kind of help, we would have never put him in placement [Gracewood]” Cindi says. But, “things were getting so increasingly hard,” she recalls and they were told to put Jason in “temporary and immediate care at Gracewood.”
Temporary turned into weeks and weeks into months, then months into years. Before we knew it, it had been nine years, Cindi says.
The family brings Jason home on the weekends when they can, but it is very exhausting having him at home, they say. “He’s in constant motion when he’s here. We’re worn out after the weekend,” Cindi says. When they take Jason back to Gracewood at the end of the weekend, he will lock his feet under the dashboard of the car so he will not be able to get out. “He doesn’t want to be there. It’s killing me that I’m the one doing it,” Cindi says. “I think it has a lot to do with him being unhappy in his environment,” Frank adds. “Going back, looking back…even if I went insane I wouldn’t do it again,” Cindi says, referring to placing Jason at Gracewood.
The family has battled with Gracewood over the years regarding bruises on Jason and the policies used to approach and suppress Jason, which further antagonizes him, Frank says. “It’s frustrating,” he adds. Frank disagrees with Gracewood’s policies for handling clients which, “are set in stone,” he says. “Grabbing Jason in the same spots bruises him,” his dad has noticed over the years.
Jason’s temporary placement in Gracewood turned into weeks and weeks into months, then months into years. Before we knew it, it had been nine years, Cindi says. Children in Nursing Homes / 17 “We’re so involved in our son and yet they make no attempt to pick our brain for suggestions to deal with him,” Frank says. The family plays an active role in Jason’s life at Gracewood and want what is best for him. They know that he loves water and advocate that he goes swimming at the facility. They have a pool at home, and when Jason comes to visit, Jason gets his swimming trunks and suntan lotion, as indication that he wants to be in the pool.
Jason also loves music which is constantly playing in his room at Gracewood. He especially loves country and Christian, his family says, and enjoys watching music videos. The family has a trampoline, and Jason likes lying on it while someone jumps around him to bounce him in the air.
Currently, Jason’s family is focusing on his interests and what it would take for him to leave Gracewood and live in the community. As much as they would love to have him at home, they know their house is too small and it would not be feasible for Jason and the support that he would require. Frank dreams of building a bigger home with a soundproof room for Jason, so he can watch television in the middle of the night if he wants.
Jason cannot live in a group home setting because he is fed through a tube, which by policy, requires that a nurse administer his feedings. Frank thinks that this is ridiculous, because Jason’s sisters could feed Jason when they were in elementary school, he says. Right now, the family is focusing efforts on developing a Microboard, with the help of Ruthie-Marie Beckworth, from Tennessee (www.tnmicroboards.org). Ruthie is a PATH facilitator, which stands for “Planning Alternative Tomorrows with Hope.” She has helped families in Tennessee develop Microboards and create homes in the community and support for a family member with a disability.
Recently, Jason’s family met with Ruthie and her husband, Mark, as well as with members of their church and community to discuss the possibility of Jason living in the community. They discussed Jason’s interests and needs and what it would take to get him out of Gracewood. “I’m excited. I’m thrilled,” Frank said at the meeting. “Let’s get started. Jason deserves it.” The group plans to continue meeting until it discovers a solution to help Jason in the community.
Jason’s family knows he needs 24-hour support, and they know that with a Medicaid waiver, it is feasible. Frank says they are very excited about the PATH option. Through the Microboard Ruthie presented, Jason’s family and community supporters would develop a non-profit organization that would run Jason’s support outside of Gracewood. The Microboard would manage Jason’s caregivers, which appeals to them, Frank says.
Cindi wants more than anything to be the one in control of Jason’s care and has felt a loss for the last nine years having to leave him to the care of others. “He’s my kid…God gave us this boy,” she says, her eyes filling with tears. “[It] hurts me that we’re not the ones that get to care for him,” she adds.
She tries to describe the pain she feels knowing that they were not able to care for their son all these years. “It’s horrible that we were unable to get support from the system that would enable us to give that care,” Cindi says. The family knows they must have support from the State to help Jason live in the community. It’s past time for Jason to leave Gracewood and have a life worth living, surrounded by people that love and support him, his family says. Frank feels that if the state could provide his family with the funds they provide Gracewood, he could give Jason a much better life in a much better home environment. It’s time, they say.