TALLAHASSEE — Florida lawmakers told state health officials earlier this year that a Medicaid program for people with disabilities has too often overspent its share of the state’s budget. Those health officials, according to recently released draft documents, may soon recommend rationing specialized care to some of the state’s most vulnerable people to meet the Legislature’s demands to curtail costs.
Working documents, posted online by the advocacy group Disability Rights Florida, show that the state’s Agency for Persons with Disabilities has been weighing several options in the last month and a half that could reduce providers’ service rates or put more stringent limits on services like specialized mental health or speech therapy for people with developmental disabilities. The potential changes could affect virtually every client that receives services through the program, to save tens of millions from the agency’s bottom line.
The program, known as “iBudget,” serves more than 30,000 Floridians and has been troubled for years by rising costs and an allocated budget that struggles to meet them. The Agency for Persons with Disabilities already has limits on how much it gives some clients to pay for services, and more than 20,000 people remain on a waiting list to even begin receiving services from the program.
When the redesign effort was first announced, hundreds of people wrote to state officials and Gov. Ron DeSantis begging them to keep services and funding intact. They include people with disabilities who say they rely on the program to bathe and eat to aging parents saying they fear what will happen when they are unable to continue caring for children with special needs.
Though official recommendations were not yet included on a draft of the final report, the agency’s documents included a spreadsheet of various “cost containment options” that could shave hundreds of thousands to millions of dollars off the agency’s $1.4 billion budget. A draft of the recommendations report, which is due to the Legislature at the end of the month, lists various categories of cuts and says many are “under consideration, needs further study.”
Disability advocates say that if some of the proposed changes become part of the final overhaul of the program, people with disabilities could be left without care that they need or receive far less than they require to lead full, independent lives. Their families could also be forced to use their own finances — or provide their own care — to keep them from landing in institutions.
“If you cut hours and you limit what someone’s getting, you’re cutting services,” said Ven Sequenzia Jr., whose daughter has autism. “I was born at night but it wasn’t last night.”
The documents are labeled as “for discussion purposes only,” and include the disclaimer that the Agency for Persons with Disabilities “does not necessarily endorse any of these options at this time.”
“There is a breadth of alternatives to be considered. (The Agency for Persons with Disabilities) appreciates the hundreds of comments it has received from customers, families, and stakeholders about redesigning the iBudget waiver,” the agency’s communications director, Melanie Mowry Etters, said in a statement. “Our goal is to reflect many of the ideas and suggestions in our final document. The documents posted on the Disability Rights Florida website are working research documents and are not the redesign plan which has not been completed yet.”
“The Florida Legislature will ultimately decide if, and to what extent, changes are made to the iBudget Florida waiver and how services are delivered to our state’s most vulnerable citizens,” she added.
Until the completed plan is released at the end of the month, the draft documents are the most substantial look at what might become the final proposed redesign. Two interim reports the agency was required to file with the Legislature have each been brief one-page summaries of the meetings health administrators have held.
Lawmakers have said the final plan, which must be provided by Sep. 30 to the Legislature, must meet a variety of criteria, including steps to restrict the agency’s budget and “identify core services ... essential to provide for client health and safety and recommend elimination of coverage for other services that are not affordable based on available resources.”
The plan would overhaul what is known as “iBudget,” the Medicaid program that serves more than 34,500 clients with the Agency for Persons with Disabilities. The program operates under a “waiver” of federal rules that allows the state to be more flexible in how it delivers and spends on services, so that clients can live as independently as possible in homes or communities.
But the program, agency officials have said, is subject to rising costs of care and aging clients, which has driven up the cost. According to a corrective action plan filed earlier this year, there were also about 21,900 more people on the waiting list for the program.
Though the agency has regularly requested more funding over the years, those requests have regularly been denied, and the program is not included in a state budget estimating conference that would allow lawmakers to anticipate the level of need. But because the waiver program is an entitlement, APD must cover clients’ additional costs even when they exceed program’s budget.
Lawmakers, frustrated with regular overspending, voted this spring to require the agency’s waiver program be restructured.
As the agency began to review the program over the summer, it asked the public for comments and held a meeting last month at the Agency for Persons with Disabilities’ headquarters in Tallahassee. Hundreds of people called in or attended to detail their concerns with the existing program and suggest what should be changed: more training, less paperwork, and keeping services available for people with developmental disabilities.
Hundreds more also wrote to the agency to publicly comment. But the agency, citing health privacy laws, redacted the public comments to remove the names of people who said they or their family members were receiving services from the agency.
Those comments, overwhelmingly, also ask for state officials to keep services and preserve the waiver’s funding.
“Today I find myself once again wondering what services the state is trying to cut out now or even lessen. I’m in panic mode,” one mother of a 27-year-old client wrote, saying she herself has a disability and is almost 50. Without any one of the services her son currently has, she added, he “is at risk for institutionalization.”
“Cutting these funds, which are already under funded, will eventually take the disabled community back to the Kennedy era,” wrote another mother, who has two children with disabilities. “Please don’t punish my children because Florida has to cut their budget!!!!”
“I began working and paying taxes at 17. I continued working until I was 57,” wrote a 67-year-old with multiple sclerosis. “Please don’t pull the rug out from underneath me now. Today, I can’t stand.”
A mother of an 8-year-old boy with autism, writing to Gov. Ron DeSantis, said she was “not asking you, but begging you to put a stop to any cuts to [the] Medicaid Waiver.”
“Without this service, I will not be able to care for my son alone,” she added. “I am trying to hold back tears as I know there are families who probably [have] it worse… We did not choose our circumstance, our circumstance chose us.”
Options on the table
Drafting documents for the final plan float several categories of changes: adjusting payment rates to providers, limiting, restructuring or eliminating services, managing what services are used, and capping how much individuals can spend.
Some of the proposed changes, such as having local, independent waiver support coordinators contract or be employed by the state , have no assessed cost in the documents. But most — from reducing the rate at which providers are paid to limiting how much services can be used — include cost savings in the millions. (The agency’s deficit in the last two years has run over by more than $150 million.)
Many of the suggestions involve capping existing services: limiting specialized mental health care to two hours per month, respiratory therapy to three hours per week, or occupational therapy to two hours a week.
Another suggestion would curtail how many people can be added into the program. One would limit crisis enrollment into the waiver program to 30 people a month, to save up to $115 million in five years. For the last two fiscal years, about 100 people a month have been admitted through crisis enrollment.
One of the suggestions is for a “hybrid” managed care model through the Agency for Health Care Administration for medical services, though advocates have long cautioned that “managed care” — where private contractors manage patients’ care and can control what services are used, is a poor fit for people who often need a lifetime of medical services.
One of the most concerning, several advocates said, is a suggested reduction to providers’ services rates, ranging from reductions of 1% to 3%.
“You already have a system that’s underfunded. It’s strained, there’s a hiring crisis, providers are having to compete literally with minimum wages,” said Suzanne Sewell, president of the Florida Association of Rehabilitation Facilities. She warned any more reductions could force some providers to close their doors: “At some point in time, the band gets stretched too tight and something has to give.”
Rates for providers have remained steadily below 2003 levels, Sewell added, when rates were cut by 12% to 25%. Incremental increases have been made since, but compensation remains an issue, she said.
Amanda Baker, 39, a client of the Medicaid program who has cerebral palsy, said changing provider rates could have sweeping effects on what services are available in parts of the state.
“If they think there’s a crisis now, wait until they try to reduce the rates of people,” added Baker, who has advocated for people with disabilities. “I don’t think any of the suggestions in that paperwork are viable… they’re all going to put somebody at risk.”
After the plan is completed — and reviewed by the governor’s office — it is due to the Legislature’s two leaders by the end of the month.
Then, lawmakers, in committee weeks and during the legislative session starting in January, will have to decide on the agencies’ recommendations and how to address the waiver program.
Sewell said she expected at least some of the changes floated in the report to make their way into the final document: “We will be talking to legislators and expressing our concern.”
But Valerie Breen, the executive director of the Florida Developmental Disabilities Council, stressed the final plan could still “look totally different.” Noting she had not seen the final report, Breen said in her past experience that she had seen final plans veer significantly from the drafted options.
“It’s a snapshot in time,” she said of the draft. She noted, though,”there is an enormous amount of pressure for the Legislature to pick and choose.”