TALLAHASSEE, Fla. _ For almost every waking hour of his day, 33-year-old Jason Hahr needs someone else to do what his own body cannot.
Hahr has spastic quadriplegic cerebral palsy, which means he needs a personal care assistant to physically help him perform the basic activities of daily living. He also writes and advocates for people like him, often from his home next door to his parents in Ocala.
When Hahr writes, an assistant helps him type the letters. When he goes out to eat, an aide helps him feed himself, because his condition has left his arms and hands contracted, curled into balls. His assistants help him get in and out of bed, dress, shower, and brush his teeth.
Those services are possible only because of a state Medicaid program for impoverished and disabled Floridians, which provides Hahr and other people with disabilities money to get services _ such as in-home nursing, physical therapy and transportation _ they need. But state disability administrators are developing a plan to restructure the state's home and community-based waiver program for Hahr and more than 34,000 others like him, because the Legislature says the state's disabilities agency has spent too much beyond the budget it is given.
"Without the waiver services, I could never afford care," said Hahr, who makes some money from his advocacy work but not enough to cover the 12 to 14 hours of assistance he needs each day. "If I wasn't on the system, I wouldn't be able to be a functioning member of society. I would be just a body."
Even as he worries about what care and services the state may take away, Hahr is one of the fortunate ones: There are nearly 22,000 more people who are on a waiting list for services, some of whom have waited for years, if not decades.
Those on the Medicaid waiver are waiting to see how state administrators intend to change the program. Hahr says the consequences are about more than just money for him and tens of thousands of other clients _ they could mean the difference between continuing to live in their own homes and communities and being pushed into large, segregated institutions.
One of the proposed changes, made public through records shared by Disability Rights Florida last month, includes cutting the number of hours of assistance Hahr and other Floridians receive to 10 hours a day or less.
For Hahr, losing even some service time would mean giving up the simplest things others take for granted _ going to doctor's appointments, eating dinner out with family, going to a movie or on a date. If he can't keep the assistance he needs to continue to live on his own, Hahr said he fears he'll eventually end up in a group home or a nursing facility in order to survive.
"They don't want to see us," said Karen Clay, a Tampa advocate whose son, Michael Phillips, has spinal muscular atrophy, a rare genetic condition that requires him to breathe with a ventilator and communicate through sensors on his forehead. "We're invisible to them because we don't have money, we don't have lobbyists, we don't have the voice we should in Tallahassee."
