Florida is planning a major overhaul to its Medicaid program that serves more than 30,000 people with disabilities, and hundreds of Floridians have told the state what they want — and fear — from the change in both an emotional public meeting that ran overtime and comments submitted in writing.
Though administrators at the Agency for Persons with Disabilities asked the public for feedback, it now says those written comments are private health information that needs to be protected from public view.
It argues that parts of those comments — namely the identities of the commenters — are shielded by HIPAA, the federal law intended to protect the privacy of people’s personal health records. They’re also charging hundreds of dollars to read what people said, citing the cost of redacting that information.
HIPAA, or the federal Health Insurance Portability and Accountability Act, was passed two decades ago in part to protect a patient’s medical records with a healthcare provider. Though these comments were submitted as part of a public comment process on a pending public policy — and people who commented in person at a July meeting freely identified themselves — agency officials say that doesn’t matter.
“The Agency for Persons with Disabilities follows federal and state privacy and confidentiality requirements as they relate to our customers. All documents must protect the identity of customers receiving services from APD,” said APD Director Barbara Palmer in a statement. “As a covered entity, there are hefty penalties for any organization that disclosed protected health information even if it was gathered during a public comment period. Attorneys spent many hours reviewing the requested documents to ensure APD was in compliance with legal requirements.”
But open government advocates say that there’s uncertainty that the federal statute applies to APD, and that citing HIPAA to redact those comments flouts its intended purpose.
“It’s a perversion of law,” said Barbara Petersen of the First Amendment Foundation, which advocates for open government and transparency. (The Miami Herald and Tampa Bay Times are members.)
HIPAA “is meant to protect your medical information that would not otherwise be public,” she noted, such as seeing a doctor or seeing a pharmacist. ”It does not apply, in my opinion, to comments made public to a public institution.”
APD began redesigning “iBudget,” the Medicaid program that serves many of its clients with disabilities, after state lawmakers voted earlier this year to require it be restructured after long-running deficits. Though the agency has regularly requested more funding over the years, pointing to rising costs and aging clients, those requests had been denied.
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, with their own budgets they can use on services. As of January, the program served more than 34,500 people with developmental disabilities and another 21,900 were on the waiting list, according to a corrective action plan filed at the time.
The legislatively mandated overhaul requires the program to meet a set of criteria that include more “budget predictability,” as well as identifying “core services” with recommendations for “other services that are not affordable based on available resources.”
As the agency began to review the program, it asked the public for comment over the summer and held a meeting last month at APD’s headquarters in Tallahassee. Hundreds of people called in or attended to detail their concerns with the existing program and suggest what should be changed: improving training, cutting down on paperwork, and most of all, keeping services available for people with developmental disabilities.
They pointed to past reductions and current delays in obtaining services, as well as several fears with the new changes: primarily that the agency might shift 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.
At the end of that meeting, Palmer, the agency’s director, promised that administrators would continue to research options and incorporate the public’s comments into their work. She also put out a request for more feedback.
“There were several people that brought up the word “waste” — there’s so much waste,” she said at the end of that meeting. “Those of you that have said that, I’m asking you to please put in writing to us what you mean. That could mean a lot of things to a lot of different people. I really need to know what you’re talking about.”
Officials directed comments to an email address — email@example.com, run by APD — to “offer the Agency comments, ideas, and suggestions.” On the agency’s homepage is a disclaimer that “under Florida law, email addresses are public records.”
The agency, according to an invoice released as part of a public records request, received more than 500 comments in writing, spanning nearly 200 pages, in response to its request for public feedback. It is charging more than $200 to release those records under a public records request.
The public comment period is just one avenue by which APD and affiliated entities have been asking for feedback on the impending Medicaid change. Late last month, the Florida Developmental Disabilities Council sent out a survey to hundreds on its mailing list, asking among several questions for respondents to anonymously identify which services they least need.
The question spurred worries that the data might be used to justify cuts rather than prevent them, prompting the private nonprofit council, which has members appointed by the governor and includes some state healthcare officials like Palmer, to say the survey was meant only to give families and individuals receiving services “a collective voice on the services most important to them.”
APD is required to submit its final redesign plan to the Legislature by the end of September.