Decatur, Georgia (Senate District 10)
Donald Wiley loves sports. He especially loves anything football-related, particularly the Atlanta Falcons. Even though football is number one, he will gladly talk about basketball and the Atlanta Hawks. Donald has cerebral palsy, and he is unable to work. If he could have a job, Donald would love to travel the world and be a sports writer.
One of Donald’s favorite pastimes is to go to his barber shop, where he gets his haircut and visits with other patrons at least once a week. He has good friends there, and that’s where he gets most of his news and gossip about sports. It’s also where he met his friend, Osaiah, who is Donald’s longest friend. Osaiah takes him to Atlanta Falcons games. Donald has a signed picture of Michael Vick on his bedroom wall.
He’s extremely proud of his hat collection – baseball caps, camping hats, but most of all his grandfather’s fedora. He called his grandfather Pop, and he’s very proud to have a picture of himself dressed up for Sunday morning, looking quite dapper and wearing Pop’s hat. (Story continues below after slideshow.)
Donald has a speech impairment called apraxia. He communicates with the people who know him best in a variety of methods. He can get his mom’s attention from the other room simply by making his wheelchair click a couple times. However, he doesn't like wearing the MedicAlert device she got him because one of them – each accuses the other – accidentally set it off one time and the ambulance, fire and police all showed up at their door unannounced. They’ve agreed for now to leave the device on his bed for night-time use only.
He is a proud voter and participates in lobby days at the Capitol. He and his mom have also gotten to know Hank Johnson, their US Congressman. Jackie is also a very active citizen advocate, and she stays informed about her son’s evolving needs. She knows all of the codes and policies that provide resources to help her with Donald’s care.
Donald receives funding for services through the Independent Care Medicaid Waiver. Thanks to the waiver, Jackie is able to hire two caregivers to come in shifts and help her throughout the week with Donald’s care. Jackie worked for 40 years at the Grady Emergency Room, but due to Donald’s needs and a decline in her health, she recently retired.
The waiver has literally changed both Jackie and Donald’s lives. Still, Jackie was resistant to the idea at first. “At first, you know, being a mother, I didn’t want to hear it. I kept putting it off. I said, ‘He’s my son, I can take care of him on my own. I don’t need anyone’s help,’” Jackie says of how her journey began.
Now Jackie talks to other parents about why they should start the Medicaid waiver application process early. She has chosen to self-direct Donald’s Medicaid waiver, which enables her to have direct control over who she hires and how Donald’s plan of care is implemented.
Caregivers assist Donald with bathing, dressing, and other activities of daily living. Not only do they give him encouragement to stretch on his own, they get him out into the community to movies, go out to eat, to museums and even to the doctor. One of Donald’s caregivers, Ann, just started a couple of months ago, so they’re just getting used to each other. The other caregiver, Vonda, has been in his life for a long time.
Vonda encourages Donald to use and stretch his hands, which are curled up as a result of his decreased muscle tone. She urges him to try and extend his fingers more than he’d generally like. She wants to help keep him as flexible as possible. This is very important. If his digits continue to become more contracted, he would not be able to operate his electric wheelchair or feed himself. It would greatly impact his independence and reliance on other people.
Thanks to the waiver and his mom, Donald gets the care he needs. He also has the support and assistance he needs to do things he really enjoys. He loves to watch action/suspense films, especially ones about the army and explosions, and he’s a huge fan of Lethal Weapon. He’s even getting into the new Lethal Weapon television series that started this season, watching it faithfully every week with his mom.
Even more than movies or television, Donald loves music. He got a great, new speaker for Christmas, and he feels like he could listen to his music all day. At Briley Baptist Church, where he and his mom are long-time members, Donald was the star of last year’s Christmas play, dancing alongside a ballerina in his wheelchair in a duet they practiced for several weeks.
Writer: Shannon Turner, Photographer: Lynsey Weatherspoon