Ohio’s sickest children may wind up in budget vise – The Columbus Dispatch

Catherine Candisky The Columbus Dispatch @ccandisky

Gov. John Kasich's administration plans to overhaul a program that helps pay medical bills for Ohio's sickest children, but it is raising concern that fewer will get the care they need.

The Bureau of Children with Medical Handicaps (BCMH) pays for medicine, treatment and services not covered by insurance for more than 41,000 children with conditions such as cystic fibrosis, epilepsy and cerebral palsy.

The governor's plan, tucked into the state budget proposal he submitted to lawmakers, would discontinue the bureau andslash eligibility guidelines for a new managed-care program under Medicaid beginning July 1.

State Medicaid Director Barbara Sears says everyone currently in the program will be grandfathered in and continue to receive services. But changes for babies born after July 1 or families seeking to enroll after that date are necessary to make it more efficient and deal with an $11 million budget shortfall projected for this year.

"These are parents who have fought for their children before they were even born," Sears recently told a House subcommittee. "I feel very confident that we have the ability to provide them with the necessary services through the Medicaid program."

But families in BCMH say the plan, if enacted, will take away vital help for middle-class families who, even with private insurance, face thousands of dollars in uncovered medical expenses each year.

Oblivious to the political debate that could impact kids born with cystic fibrosis like her, 2-year-old Melody Stasel giggles in her princess rocker as a compression vest shakes her tiny body. The $16,000 vest attached to a $20,000 machine in her family's living room in Worthington shakes loose the thick, sticky secretions that build up in her lungs. Those secretions can cause infection and organ damage.

In addition to the twice-daily treatments, Melody takes 20 medications and drinks three nutrition supplements each day to stay healthy. Those cost about $8,000 a month.

Her parents, Dustin andJuanita Stasel, have private insurance through his engineering job at Honda, but it doesn't cover all Melody's expenses, including some medication costs and $500 clinic visits every eight weeks. They qualify for help through BCMH after spending $4,200 out of pocket each year for expenses not covered by insurance.

"It will be hard for families," Mr. Stasel, 25, said of Kasich's proposal. "BCMH was there to make us feel a little more secure for our daughter's future. We know there are these medications coming down the pike that are going to be extremely expensive but also extremely vital for her to have a healthy life."

After receiving Melody's diagnosis, Mrs. Stasel, 26, recalled thinking, "How are we going to be able to afford the life that we want? How are we doing to be able to do this? BCMH was the biggest comfort. I can't imagine families after July 1 not having that."

The Rev. David Hoffman, whose 16-year-old twin daughters, Alyson and Andrea, have cystic fibrosis, said, "BCMH is a safety net that keeps folks employed and allows them to keep their private coverage."

Hoffman and his wife, Melissa, a teacher, also have private health insurance but must spend $1,500 out of pocket each year to qualify for help.

"It would wipe out our savings" if the program goes away, said Hoffman, who lives in Marion and serves on BCMH's parent advisory board. "It's hard to imagine what we would have to cut out."

BCMH is currently operated by the Ohio Department of Health for families with incomes up to 500 percent of the federal poverty level, or to $123,000 a year for a family of four. Under Kasich's plan, a new program will be created July 1 within Medicaid,the tax-funded health insurance for the poor and disabled, with eligibility capped at 225 percent of the poverty level, or up to $55,350 in income.

Of the 41,000 current enrollees, about half meet the new criteria and would be moved into the Medicaid program. The rest, those with family incomes above 225 percent of the poverty threshold, would remain with the Health Department until they reach age 21, or their medical or financial circumstances eligibility changes.

Republicans and Democrats on a House finance subcommittee say they are concerned about the proposal.

"If you think of a safety-net program, this is it, and the administration is pulling the rug out very quickly," said Rep. Emelia Sykes, D-Akron. "They've said it's costing too much."

But Sykes said she's worried about moving children with such complex medical needs into Medicaid managed care because of mixed results in other programs and uncertainty about federal Medicaid funding. "We don't want these children to go without care."

"Eligibility levels are basically being cut in half from 500 percent of poverty to 225 percent ... does this create incentive for parents not to work and just be on Medicaid? These diseases are very expensive," Sykes told Sears at a recent hearing.

"We picked 225 percent for a variety of reasons. No. 1, we are a safety-net program, and as a safety-net program we have to think about what makes that program sustainable for the state when we know there are a lot of pressures financially on how our state Medicaid program is impacting the state budget," Sears said.

BCMH cost $40.1 million last year, $33 million paid by the state and the rest covered by federal aid. That's up from $37.7 million three years ago. During that time, enrollment has increased by 19 percent.

ccandisky@dispatch.com

@ccandisky

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Ohio's sickest children may wind up in budget vise - The Columbus Dispatch