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People with disabilities worry Florida’s cost-cutting will reduce essential services

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Autism spectrum disorder (ASD) is a group of developmental disabilities that can cause significant social, communication and behavioral challenges. Here are some of the signs and symptoms associated with autism.

Lawmakers ordered Florida disability administrators this year to restructure its community-based Medicaid program that delivers healthcare to tens of thousands of people with disabilities.

But as two state agencies begin to devise the new structure of the program, clients, caregivers and service providers are worrying that the coming changes to lower the agency’s budget might cut critical services to people who need them.

In a meeting Wednesday to solicit public comments on the upcoming changes, dozens of people urged the agencies — the Agency for Persons with Disabilities and the Agency for Health Care Administration — to improve training, cut down on paperwork and waste, and keep services available for people with developmental disabilities as they determine how to remodel the program.

They also outlined a host of concerns, chief among them that shifting healthcare delivery to a system of managed care, where private contractors manage patients’ care and control what clients of the program are able to get, including services like in-home nursing care, speech and physical therapy and behavioral support to manage difficult behaviors.

Almost all of the state’s Medicaid services are now run through a statewide managed care program, though advocates say it is ill-suited for people with long-term conditions. While cuts to such programs would save taxpayer dollars, advocates for people with disabilities worry people dependent on the program will suffer or be forced to move into institutions.

Barbara Braun, who runs a case management agency in the Suncoast Region, said at the meeting that the program needed more resources, not less: “We need funding — y’all need to fund this program. Enough of this [BS].”

APD’s Medicaid services, run through what’s known as “iBudget,” operates under a “waiver” of federal rules that allows the state to be more flexible in how it delivers and spends on services. iBudget’s structure is meant to allow clients to live as independently as possible in their homes or communities, and gives individuals budgets they can use on services.

The program, which is heavily subsidized by the federal government, is designed to discourage keeping people with disabilities from large, often isolated institutions. Federal laws, such as the Americans with Disabilities Act, strongly encourage the state to house people with special needs in communities and private homes.

As of January, more than 34,500 people with developmental disabilities — such as mental disabilities, cerebral palsy, autism and Down syndrome — rely on the program, with another 21,900 on the waiting list, according to a January corrective action plan.

But the program, and the agency, for years have regularly outspent the money the Legislature sets aside, despite regular requests for more funding that have been denied. This year, the agency received $1.4 billion in its annual budget; in the last two years, it has run over its appropriations by more than $150 million and had to go back to lawmakers to request more money.

The agency said it has run over its budget in past years in part because aging clients — and the additional services they require for care — are increasing costs. But those deficits prompted lawmakers early this year to mandate that disability administrators work with the state agency that manages Medicaid, AHCA, to restructure the program, saying that the agency needed more “budget predictability.” Lawmakers did increase funds this year in the iBudget program in addition to the mandate, as well as increase dollars for direct-care providers for people with disabilities.

The redesign, which state officials need to provide to the Legislature in time for next year’s lawmaking session starting in January, has 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.”

But clients and caregivers on Wednesday recommended several changes to the existing program and raised over some potential changes might trim needed services for limited impacts in decreasing costs.

Amanda Baker, who has cerebral palsy and is a member of the Florida Developmental Disabilities Council, said that she has been overwhelmed by administrative responsibilities just to keep her existing benefits.

“I’m having to do all this paperwork, and it takes up at least a part-time job’s worth of work,” said Baker, who uses a wheelchair and also works as a benefits planner and has worked for providers and state agencies.

Baker also said her difficulties with APD don’t stop with the paperwork: Before she moved from Panama City to Tallahassee because of Hurricane Michael, she used to have to have hearings with APD by phone because her local office didn’t have a room her wheelchair could access, she said.

“The more independent my services make me, the more I’m fighting to keep them, which is ridiculous because that’s the whole point of APD’s services — to make us as independent as possible,” she said.

Several advocates also said shifting health care dollars to managed care could be a “disaster” for clients, said Nancy Wright, an attorney who has regularly represented clients with disabilities.

“The whole managed care option is not for our population,” said Ven Sequenzia, Jr., whose daughter is autistic. Most medical costs, he said, are finite: “When you have surgery or you need a specific medical treatment you’re cured and you move on from that, or you do rehab.. it’s done and over.”

“Ours never end,” added Sequenzia, who has been an advocate for people with autism and other disabilities. “Insurance companies are not going to want to serve our kids and our adults under the traditional managed care model… It doesn’t work.”

Sequenzia also criticized lawmakers for providing insufficient funding to the agency, noting that APD, a smaller state agency, does not have the program included in the state’s annual budget estimating conference.

“It’s unfair to say APD has not lived within its means,” he said.

More than 450 people phoned into the meeting Wednesday, and the third-floor conference room in APD’s headquarters, where the meeting was held, ran over its capacity of a few dozen people. Several more people had to use an overflow room to listen to the more than three-hour meeting.

At the end of the meeting, APD Secretary Barbara Palmer called on attendees and listeners to submit as many specific suggestions as possible in writing to the agency.

“We will continue to do this research, and we will be putting ideas together,” she said.

The agency is taking public comments until July 24. Its first of two early reports is due to the Legislature at the end of the month.

Elizabeth Koh is a state government reporter in the Miami Herald and Tampa Bay Times’ Tallahassee bureau, where she covers health care politics and policy (and the occasional hurricane). A Brown University graduate, she has also covered local politics for the Washington Post and national politics for the Dallas Morning News’ D.C. bureau.
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