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Survey seeking input on changes to disability program draws blowback from clients

Miami Herald - 8/7/2019

Aug. 7--TALLAHASSEE -- As state administrators eye an overhaul of a Medicaid program that delivers healthcare to tens of thousands of people with disabilities, families and advocates of people with disabilities are preparing to fight what they fear might be cutbacks to the existing program because of long-running deficits.

But an effort to gather feedback last week spurred worries that the data might be used to justify cuts rather than stop them, over a question that asked respondents to identify which services they least need.

A 13-question survey created and shared by the Florida Developmental Disabilities Council last week asked families and individuals to anonymously weigh in on the Medicaid program run by the Agency for Persons with Disabilities, which is being restructured after state lawmakers ordered a "redesign" during the legislative session earlier this year.

The private nonprofit council, which has members appointed by the governor and includes some state healthcare officials like APD Secretary Barbara Palmer, helps coordinate state and local agencies and federal funding, as outlined in state statute.

But some chafed at the questionnaire, hosted on the platform Typeform, for including one question on what "the least essential service that the person with the disability is receiving." Respondents could choose among two dozen categories ranging from skilled nursing to physical therapy to supported living coaching.

Some advocates said the question is unanswerable for families that are already fighting for more services, not less, for their loved ones or themselves.

"FDDC should not be putting out surveys for families to fill out choosing services to limit or services that are most needed," wrote disability advocate Ven Sequenzia Jr. in a Facebook post shortly after the survey was shared. "It is supporting the Legislature's attempt to limit or cut services and could be used to eliminate services from many individuals."

The response to the survey spurred the non-profit group to send a statement to its mailing lists Monday saying the survey was meant only to give families and individuals receiving services "a collective voice on the services most important to them."

"Council family members, researchers and self-advocates felt we needed to take action and wrote our 13 survey questions," the email said. "It's the Council's way to provide individuals and families a way to think about what's most critical to them, AND if they had to give up one thing that wasn't very important, what it may be... The Council wouldn't have designed and sent the survey if we weren't deeply concerned that all of us receiving services need to start thinking ahead for ourselves, before state agencies and legislators start thinking for us!"

Lawmakers for years have criticized the agency for overspending what the Legislature sets aside for it in the yearly budget, though the agency's regular requests for more funding have been denied. The agency has pointed to rising costs in part because of aging clients and the additional services they require for their care.

This year, lawmakers cited the deficits in mandating that the agency's administrators redesign the Medicaid program that serves people with disabilities, directing APD to submit a new program plan to them by the end of September. The overhaul will require the program to have more "budget predictability" as well as identify "core services" with recommendations for "other services that are not affordable based on available resources."

At a public comment meeting last month, advocates and clients had worried those criteria might signal a number of potential changes, primarily that healthcare delivery might shift to a system of managed care where private contractors manage what services clients of the program are able to get. Almost all of the state's Medicaid services are run through a statewide managed care program.

APD's Medicaid services, run under a program known as "iBudget," operates a "waiver" of federal rules that gives the state more latitude in how it spends its money on services or delivers them. The focus of the iBudget program is to give clients as much independence as possible in homes and communities, provide budgets they can use on services they need, and help avoid being moved into institutions.

But few details about what the new program will look like have been released by the agency. A one-page progress report submitted to the Legislature at the end of last month generally summarized the agency's progress: more than a dozen joint meetings and one public meeting to get feedback from communities, and some research on what other states' programs look like.

It was in that gap that the council wanted to gather data, said Valerie Breen, the council's executive director: "I never thought a simple survey would create such a maelstrom."

She called the question "tough to ask" and said that the council would "never, never recommend any elimination of a service at all," adding that the council intended to use the data only to push for more services, not fewer.

But she said she had heard from families "that have said verbally they have more services than what they need, but they are afraid to say anything about that, because they're afraid they will lose it."

The survey does not require respondents to answer every question. Of about 712 respondents Monday afternoon, 695 answered the question about the four top most critical services. But nearly a fourth -- 158 respondents -- skipped the question about the one least essential service.


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