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Change to Believe In

Government has a bad name these days, but here's a story about how smart people in public service can make changes that improve people's lives. And how a reform can be both conservative and progressive at the same time.

Mark R. Howard
Mark Howard,
Executive Editor

About 29,000 Florida citizens receive services under part of the federal Medicaid program because they are developmentally disabled. The law spells out five disabilities that make people eligible for aid: Autism, cerebral palsy, intellectual disability, spina bifida and Prader-Willi syndrome. The services, coordinated through the state Agency for Persons with Disabilities, include some specialized medical equipment but mostly involve things like personal care services, job training and transportation to day centers or jobs. The idea behind providing the services is a good one: Keep disabled people with their families and in their communities, and out of government-run institutions. The cost is split about 55-45 between the federal government and the state.

Here was the problem, which many government programs share. Costs grew as the menu of services grew, and the only way that bureaucracy knows how to limit cost is to create more bureaucratic hurdles so the money doesn't flow as quickly. Over time, of course, the new hurdles succeed neither at limiting cost nor improving service — they just slow things down for the people who need help and anger them in the process.

So it was with the disabilities system. An example of how bureaucratic it became: Let's say a middle-aged woman providing primary care for her intellectually disabled son breaks her hip. Under Medicaid, the woman is entitled to some in-home support that would help her son get ready for work and help maintain the home while she recuperates. But actually getting that help was another matter. The woman had to submit a request for the in-home services to her son's case manager ("support coordinator"). The coordinator then sent it to the agency's area office, which then had to pass it to a third party "prior authorization" service, which reviewed the request, approved it and then passed it along to the agency's central office in Tallahassee. The central office had to approve it, then sent it back to the area office, which then sent it back to the case manager, who eventually got back to the mother with the go-ahead.

Even if she were willing, the regulations wouldn't allow the woman to simply forgo a service that already had been approved and shift that money to pay for a service that she and her son needed more urgently. The benefit structure also produced a horrific outcome for the state: The pool of people already receiving benefits sucked up any new money coming into the system, leaving 9,000 needy adults on a waiting list. Meanwhile, services were evaluated and approved based entirely on entitlement, not how much money there was to pay for them. That left the state with an open-ended hole in its budget. About four years ago, the program ran a $150-million deficit.

Over the past few years, several states have experimented with ways to create less bureaucracy and more flexibility for the clients while reining in costs, but Florida has developed a program that puts our state at the leading edge.

The plan, called iBudget, is almost exquisitely simple. And it combines a businesslike approach to budgeting with a progressive attitude toward service that empowers disabled people and their caregivers. Under iBudget, the state will simply take the total annual amount that's appropriated by the Legislature and federal government and divide it fairly among the disabled people who receive services, using a statistically validated mathematical formula that takes into account each disabled person's condition and history.

Each disabled person, or her primary caregiver, will get a personalized iBudget that spells out how much she has to spend on services during the year. She'll get a list of the services available to her and their costs. Perhaps most important, she gets the flexibility to shift money from one kind of service to another without having to jump through all the bureaucratic hoops. She can't waste the money because she can only spend it on services purchased from Medicaid-approved providers.

The bottom line for the woman in the example above is that she can spend her son's allotment on what he needs, when he needs it. Her choice, her timetable.

The man who led the development of the iBudget program is Agency for Persons with Disabilities Director Jim DeBeaugrine, an FSU grad and former legislative committee staffer who's been running the agency since 2008. He went about overhauling the system in a very smart, open way. He first held a round of informational sessions across the state, then put together a task force that included every possible stakeholder, from advocates for the disabled to case managers to service providers to family members to disabled people themselves. The group developed the plan, and DeBeaugrine took it on the road again, for another round of hearings and public input, before he took it to the Legislature. "We didn't just come out of the ivory tower," he says.

State lawmakers, showing they're not immune to good, common-sense ideas, approved it during last year's legislative session. The iBudget program is now being phased in statewide. Federal approving is pending.

DeBeaugrine has more than an academic understanding of the difficulties the old system created. A close family member is intellectually disabled and is cared for by the disabled man's mother. "She's told me many times, and I've heard from dozens of other families, that if she had more flexibility to use money the way it needed to be used, that she could get by on a lot less," says DeBeaugrine.

Long term, he says, iBudget should help control costs, or at least mean that new money coming into the Medicaid system can go to the 9,000 adults on the waiting list. "We're trying not to take anything away from the current enrollees, but we want any new resources to go people who now get close to nothing."

Whatever the effect on cost, his primary goal in overhauling the system, DeBeaugrine says, is "to move to a system where the people that we serve have a greater say in how resources are used. This is something I'd want to be doing even if the economy were good."

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