Karen Clay operates a medical ventilator to help her son Michael Phillips, 36, breathe. Michael has spinal muscular atrophy and is confined to his bed. He can breathe only with the aid of a machine. Here, they are photographed at their Tampa home July 19, 2017.
Tampa Bay Times
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.”
‘It scares them half to death’
Lawmakers in Tallahassee have criticized the state Agency for Persons with Disabilities, or APD, for years, saying it overspends its budget to the detriment of the state’s coffers — though it is lawmakers who hold the agency’s purse strings. In May, the Legislature ordered state administrators to control those costs, directing them to find ways to “identify core services” and ensure “budget predictability.”
But many of those most profoundly dependent on APD’s services have fretted that the mandate leaves no room to adequately fund the program. They worry “core services” means some services won’t be deemed vital, or that a “predictable” budget won’t allow more spending even if needs are significant — and unmet.
The state has tried before to cut or limit agency services, cycling through different “tiers” or algorithms to ration care. Caregivers and clients say they already count their days in hours of therapy, of treatment, of time that providers have to tend to them.
Even small services that APD provides can mean significant help to families that care for loved ones with disabilities, advocates said.
“Things that may not seem like such a big deal to us can make all the difference in terms of whether a family can stay together, and whether families can continue to provide the bulk of the care if you take that ability away,” said Jim DeBeaugrine, a former APD secretary who lobbies on behalf of people with disabilities.
“Even if it doesn’t look important on paper, it may be that very, very inexpensive service that allows a family to stay together.”
DeBeaugrine’s brother-in-law, Peter, who has cerebral palsy, was able to spend years at home with his mother because of the program’s services. Until a stroke required he move into a group home, one of his most essential services was a companion who accompanied him to a Toastmasters group every week, DeBeaugrine said.
“That’s not fluffy stuff. To some people it sounds like it’s not important, but it is,” DeBeaugrine added, noting his brother-in-law became an officer with the chapter. “That’s what kept him engaged with people. That’s why his social skills didn’t deteriorate. It also was so important to his emotional well-being. He lived for that.”
Living in limbo over services that might be cut drains the people who care for them, DeBeaugrine added. “It scares them half to death. They rely on these services. They’re not frivolous.”
More than a lifeline
When Clay, the Tampa advocate, gets up every day to care for her son, she can tell she’s getting older.
For more than 30 years, her son Michael has been able to remain at home with her in Florida, through the Medicaid waiver that provides services that make her care-giving possible.
But “I can’t do today what I did ten years ago,” Clay said. “Twenty years ago, I could lift Michael and carry him up a flight of stairs. Today I can’t even get him on his bath chair.”
The services Clay relies upon — including a personal care assistant who helps Phillips move — make being able to stay in his home possible. They also enable Phillips, who communicates through sensors, to play a part in his community: He writes regularly on the Internet and has been a passionate advocate for people with disabilities through Twitter and other social media.
“Medicaid is a lifeline, but the Medicaid waiver is life,” she said. “You take that away from people and you start reopening those institutions and people have two things to look forward to in life: isolation and death.”
If Phillips were institutionalized, Clay says she fears his communication would decline, that he would end up cared for by people who know far less than she and his family do about what he needs.
Someone might not check on the tiny battery he depends on to communicate. His ventilator might break down while a distant staffer might not be paying attention.
“There would be no family, no friends, no nobody that he knew,” she said.
Clay said that when she’s gone, she knows other members of her family, like Phillips’ brother, will always look out for him. But she doesn’t intend to leave it to them, she says half seriously: “My plan right now is I’m going to live forever.”
When the draft documents were released last month, APD said that there were “a breadth of alternatives to be considered” and that the final recommendations report was not yet complete.
But lawmakers will soon make the final determination after the report is sent to them this month. Clay and other advocates have begun a postcard drive and plan to rally outside the Capitol when the legislative session begins in January. About 5,000 out of 7,000 postcards have already been mailed as part of a drive to urge the Legislature to reconsider any cuts, Clay said. “This is the fight we cannot afford to lose.”
At the heart of the program is what everyone wants, advocates say: a way to be cared for in a setting like everyone else.. People with disabilities aren’t always seen as deserving of that care, said Arizona Jenkins of Ybor City, a neighborhood in Tampa.
Jenkins, 43, has cerebral palsy and has been on the waiver “literally my whole life,” he said. It makes it possible for him to get by day-to-day: the personal care assistant who comes by daily to help bathe and groom him, to help him eat, change his linens and wash his clothes.
“Everything that you would do for yourself, I have to have someone to do it,” he said. His assistant once wasn’t paid through the program for three months, he recalled, yet still came to his home to help care for him.
“That’s what the waiver is for,” Jenkins said, “human needs.”
The waiver makes living in their own homes possible, but Hahr, the Ocala advocate, said it may also make his dreams of leaving it happen, too.
He wants to move to Tallahassee in a few years, he said, where he thinks he would be able to better advocate for other people with disabilities. The only way that can happen, though, is through the Medicaid program, which pays for the care he needs to live independently, he said.
“The waiver, the way it is now, provides me the best opportunity to live a full life,” he said.