She knows disabled people who choose to get catheters, she said, rather than do “pee math”— figuring out how soon they will need to use the bathroom and whether an aide will be there to help.
“People are struggling so much to get by with the hours they have as it is,” she said. “But the way this bill was written, you have to just make a general prediction that these services will be cut.”
Relief for Family
Eric Harkins will never be able to have a job. With cerebral palsy, intellectual disability and a seizure disorder, he cannot speak or move other than scooting across the floor on his knees and elbows. But Medicaid has allowed his sister, Kimberlee, to pursue a career as a vocational rehabilitation counselor instead of caring for him full time. It pays for aides to care for Mr. Harkins for 125 hours a week, an amount that was increased after his mother had a debilitating heart attack and underwent surgery several times over the last few years.
“He requires help with every aspect of daily living,” Ms. Harkins said, stroking her brother’s arm as he watched a cartoon in their living room one recent afternoon in Vestavia Hills, outside Birmingham. “If our caregivers went away tomorrow, I’d have to quit my job and take care of Eric.”
Mr. Harkins, 33, likes playing with toys meant for toddlers, watching shows on his iPad and going on outings to Target and restaurants, though it usually takes his sister and an aide to get him there. Because he can be physically aggressive, a day program is out of the question, Ms. Harkins said. But his mother, Judy Harkins, said that if he was placed in a nursing home, “he would die, and it would kill me, too.”
An Independent Life
Every weekday, Medicaid allows Matthew Foster to spend a few hours pursuing one cherished activity after the next: working out at the gym, taking an art class, shopping for groceries, visiting his elderly aunt. The program pays for an aide to spend 20 hours a week with Mr. Foster, 34, who has Down syndrome and cannot read well or drive.
Mr. Foster spent eight years on a Medicaid waiting list to get the coverage. Before he got it, help came from his mother, Susan Ellis, and his two younger siblings, who have since moved away. His father, Michael Foster, worked six days a week as a coal miner, though he retired recently. Both parents are 67 and have health problems of their own, although Ms. Ellis still works for a nonprofit disability rights group.
Mr. Foster lives in what used to be their garage in a modest split-level home in Vestavia Hills. His living quarters has its own entrance. Since he was 17, he has worked on weekends at Chuck E. Cheese’s, dressing in costume and entertaining children at birthday parties. His father drives him back and forth now, but in the future he may rely on Medicaid for help getting to work.
“My hope is that when Mike and I aren’t around anymore, he will be able to maintain his life the way he lives it now,” Ms. Ellis said. “That means living in the community he’s grown up in.”
As she spoke, Mr. Foster emerged in workout clothes, smiling toward his personal care assistant, Amancia Carrera, who was waiting to take him for their regular Monday sandwich at Subway — “It’s the best time for us to really talk, with eye contact,” Ms. Carrera said — and the gym.
“She’s an active person, and I’m real active, too,” Mr. Foster said of Ms. Carrera, who also works with him on basic math and reading and helps him with housekeeping, meals and bills. “I like having Amancia in my life.”