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Improvements Pitched For People With Disabilities Program

A girl with down syndrome swings in the sun.
The Florida Channel
Leon County Judge John Cooper on June 30, 2022, in a screen grab from The Florida Channel.

With time running out before state officials offer changes to a Medicaid program that serves people with disabilities, an advocacy group has proposed ways to make the program better, including steering clear of for-profit managed care plans. 

In a new report, the Florida Developmental Disabilities  Council recommends that lawmakers provide a big enough boost in funding to address a lengthy waiting list for services and increase payments to providers who assist in caring for people with developmental and intellectual disabilities.

The priorities pitched by the group were based on the results of a survey of 1,909 caregivers and people with developmental and intellectual disabilities. It gauged the most-crucial services for people with disabilities to continue living in their communities. The survey also provided a snapshot of the people served by the program.

The report came at a critical time as state officials have been charged by legislators to propose a redesign of the program, a move that has caused anxiety among providers and family members who rely on state help. Services for people with disabilities are one of the few Medicaid programs in Florida not delivered by for-profit managed care plans.

Personal care services ranked at the top of the list of crucial services in the survey, with 45 percent of the respondents listing it. Personal care services assist with activities of daily living, such as bathing, toileting and eating.

Companion services were second on a list of critical services, with support from 34 percent of survey respondents, followed by adult day training, transportation and respite care.

Of the 1,909 respondents, 88 percent were parents or guardians who served as caregivers. Thirty-two percent of the caregivers, according to the data, were age 60 and older. Another 28 percent of the primary caregivers were between 50 and 59.

Meanwhile, 59 percent of the clients were over age 23, while 4 percent were over age 60.

Nearly half of the survey respondents said they have put in requests for additional services. They were denied 29 percent of the time. And when the requests for services were approved, they were altered 31 percent of the time.

The report and recommendations were released just days before the state Agency for Persons with Disabilities is set to submit to the Legislature a redesign of what is known as the iBudget program. The program will be a priority for lawmakers during the 2020 legislative session, which begins Jan. 14.

The Legislature this spring directed the Agency for Persons with Disabilities to work with its sister agency, the Agency for Health Care Administration, to identify services that are essential for health and safety of people with disabilities and to recommend elimination of other services that are too expensive.

The redesign was a priority for the Florida House, which included the issue as part of the budget process. Senate budget chief Rob Bradley, R-Fleming Island, told The News Service of Florida last week that he will take “very seriously” the suggested redesign, which must be submitted to the Legislature by Monday.

“Every year, it’s the same situation where we are filling in the back of the (budget) bill for some needs that need to be met,” Bradley said. “We need to probably end that cycle, and we need some ideas to redesign the program.”

The Agency for Persons with Disabilities is anticipated to have a $50 million general-revenue deficit by June 30, the end of the current fiscal year.

Administered through the state’s Medicaid home- and community-based waiver program, the iBudget was implemented in 2014. The iBudget was designed as part of an effort to help people with disabilities live as independently as possible in their homes or in the community. Participants have individual budgets to spend on the services they require. Budgets are determined using a complex algorithm.

As of January, the program served 34,500 people, according to a state report. Another 21,900 people were on a waiting list for services.

The new report from the Florida Developmental Disabilities Council is titled, "Preserving the iBudget," with a sub-title, "Building Our Case."

Unlike other Medicaid programs, the iBudget program isn’t reviewed quarterly by state economists to predict caseload growth and expenditures. The Legislature appropriates money without the benefit of the state’s economic review.