CHARLESTON, S.C. — Medicaid employee Victoria Smith bit her fingernails and fumbled with the pencil on her desk as she contemplated a request from her newest client. 32-year-old Tyler Garrison, who has spinal muscular atrophy, came into Smith’s office in his power wheelchair on Monday to ask for additional caregiving hours. Knowing that this would be a difficult request to get approved, Smith immediately tried to think of an alternate solution.
“Have you tried being less disabled?” she asked Garrison.
Garrison was diagnosed with SMA at age two. He requires someone to transfer him to the bathroom and empty his catheter throughout the day, in addition to assisting with numerous other physical tasks. Not satisfied with the current 15 hours a week he currently receives with a personal care assistant, he tried to explain.
“With 15 hours a week, I have to meticulously plan out each day,” he said. “If I have someone for 30 minutes in the morning to get me out of bed and dressed, I don’t have time to shower. I have to have my PCA dump some Dasani water bottles on my head and call it a day.”
While Garrison has trained several of his co-workers to empty his catheter, he finds himself with fewer options on days when he works from home.
“I tried training my landlord to do it, but he broke the latch on the bottom and made a mess on the floor. Then he wanted me to clean it up, and he raised my rent.”
Though Smith recognized the legitimacy of Garrison’s situation, she also wondered if his disability might just be in his head.
“I mean, have you ever just given walking or moving your arms correctly a try? Decreasing the level of your disability would be a lot easier than going through a million bureaucratic loopholes to get you more PCA hours.”
Before Garrison could leave, Smith’s eyes lit up as she looked at her computer screen.
“Aha, I solved it! Joel Osteen has a new book about overcoming your disability and how it’s all in your head coming out in May. I’ll pre-order you a copy right now!”