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Advocates Wary As Legisalture Focuses On Agency For Persons With Disabilities

In the upcoming months state lawmakers will grapple with a decision: how to stabilize the budget of one of its healthcare agencies. The agency for persons with disabilities has run deficits in most years since it was created in the early 2000’s. Lawmakers have become increasingly frustrated about constantly having to backfill those deficits. Yet advocates are concerned over which chamber will get final say over how the agency moves forward.

When Hurricane Michael struck North Florida last year, it devastated parts of the panhandle and left tens of thousands of people homeless, powerless and waterless. Amanda Baker is one of them. After Michael, she came to Tallahassee from Panama City.

“I was critically ill at that time. I had been without electricity and water for several days," she told the Senate's healthcare budget committee during a September meeting. 

Baker uses a wheelchair and she relies on caregivers to help her throughout the day.

"They have to come in and help me bathe and help me get dressed, fix my food.”

That help is funded through Medicaid. The money is sorted out by the Agency for Persons with Disabilities. Baker and nearly 35,000 Floridians depend on that funding to keep them out of institutions and in their own homes and communities. But the agency has consistently overspent its budget due to state underfunding and federal program requirements. 

“The state plan says you have to stay within your appropriation. The federal government says regardless of appropriation you have to fund these people. So what do you do? That’s why we are where we are,” said APD Secretary Barbara Palmer, describing the agency's situation as a Catch-22. 

There are 21,000 people on a waiting list for services, and those services are for life. Tallahassee’s Baker has been on the program since she was three. Today, she’s 39 and Vice President of the Florida Developmental Disabilities Council, which advises the governor and legislature on policy. The council has its own suggestions on how to address APD's financial situation. It recommends moving APD into the legislature's social services estimating committee to get better estimates on future costs.

“We believe this will be helpful in setting realistic expectations and expenditure amounts," Baker said. 

There are also problems with how the agency distributes the funding it recieves from the state and federal government. 

“We run everyone through the algorithm and out the other side comes what you get," Palmer explained to lawmakers. "We’ve found its often not what you need, it’s what you get.”

Florida legislators ordered the Agency for Healthcare Administration and APD to come up with a list of recommendations to contain costs. The agencies submitted their list in September. The bottom line: give APD more money. Florida is last in the nation when it comes to funding for disability services. Other ideas include putting lifetime funding caps in place for certain services, increasing training for coordinators and expanding lifeskills training and have the ibudget reflect need.

Yet, what may be more important, is what’s NOT included in the recommendations: privatizing the program.

“I understand this redesign request came from the House...and it was specifically to be looking at managed care. I know the House has been looking at it, the Senate has been helpful in keeping that from happening," Ven Sequienzia, President Emeritus of the Autism Society of Florida, testified before the Senate health committee. 

Florida has privatized most of its Medicaid programs, shifting them to Managed Care and letting private healthcare companies administer them. AHCA oversees most of the system with exception of the people served by APD.  the Florida House has expressed interest in using Managed Care with people with developmental disabilities, a move that alarms disability rights advocates who say those private insurers aren’t able to handle the type of caregiving and independent living services disabled Floridians rely on:

“Our biggest concern is, shifting services still costs the state money, but anytime it shifts to ACHa there’s problems," Sequienzia said. 

During a recent presentation to reporters, Governor Ron DeSantis was asked about the APD’s funding future.

“Some of these folks are in pretty bad shape and we have a responsibility to do what we can. I’m very open about the best way forward. I’m not saying one or the other. But I think the way it’s gone, it’s not necessarily going in a good direction," he said. 

The worry? If the House gets its way, people will likely lose services, not gain them.