Published: Saturday, Feb. 07, 2009 / Updated: Saturday, Feb. 07, 2009 01:12 AM

Catawba infant Makaylah could be victim of Medicaid cuts

Makaylah's hospice help could end

Six-month-old Makaylah Graham looks like most babies -- she's chubby, pink and wails to let her mother know her diaper needs to be changed.

But Makaylah has a birth defect so severe that doctors say she won't live to her first birthday. "She only has half of a brain," said Jo Kornegay, a Hospice of South Carolina nurse who is caring for Makaylah.

The family has relied on Hospice to manage Makaylah's care at home. But because of state budget cuts due to the plummeting economy, Medicaid patients, such as Makaylah, will lose their hospice coverage by the end of the month.

Brandy Graham, 25, of Catawba, said she really needs help to care for Makaylah at home, and she often calls Kornegay. "I've had to call her out at 11 or 12 o'clock at night to check her breathing," Brandy Graham said.

State officials say the depth of South Carolina's budget problem left them with no choice but to cut the Medicaid hospice benefit, which is administered through the Department of Health and Human Services.

"Hospice was the only non-mandated program the state could cut," said Joel Sawyer, a spokesman for Gov. Mark Sanford. He said the choice was to completely cut Medicaid for some people or to cut a benefit that affects a portion of those covered.

The change affect patients covered by Medicaid -- a health insurance program for low-income and needy people -- but not those with Medicaid and Medicare, said Janice Broach, community relations director for Hospice Care of South Carolina.

Medicaid covers children and adults not old enough or those who haven't been disabled long enough to qualify for Medicare, Broach said. Medicare covers those ages 65 and older and some who are disabled.

The end of Medicaid hospice benefits will affect terminally ill children and young adults with cancer, Broach said. She said Medicaid patients make up 6 percent of hospice patients in South Carolina.

Although the cut is an attempt to save money, it will end up costing more, said Tamra West, director of South Carolina programs for the Carolinas Center for Hospice and End of Life Care, who has rallied legislatures to reverse the decision.

West said the change will force dying patients back into the hospital, which could cost the state $10 million more than if they received hospice care.

Broach said hospice costs Medicaid $130 a day, which includes nursing care, a social worker, equipment, supplies, medications, ambulance services and physician visits. Families also would lose special services, including counseling for up to a year after a family member dies, West said.

Sawyer said Sanford has proposed returning the Medicaid program to full funding in the next fiscal year, which would include the hospice benefit.

But Broach said it's uncertain what will happen to Medicaid patients receiving hospice benefits or those that will need them in the immediate future.

"To this date, we have never turned anyone away," said Jane Armstrong, executive director of Hospice and Community Care. "But it adds a burden to nonprofits."

Armstrong said this year, Hospice and Community Care has $600,000 to pay for patients who do not have insurance or other coverage. The funding is from private donations and United Way grants, which are shrinking, Armstrong said.

Because of an increase in the uninsured, due to job losses and those no longer eligible under Medicaid, she said area hospices might have to start turning patients away.

"The burden lies on the organization. At some point, the organizations can't bear the burden," Armstrong said.

Broach said alternative forms of care would be nursing homes, home health services or hospitalization -- all not specialized in end-of-life care, Broach said.

"Patients who want hospice want to die in their home," Broach said. "Nothing is comparable to hospice. It addresses the physical, emotional and spiritual aspects."

As the date for hospice benefits to end approaches, Medicaid patients and their families have become increasingly concerned, said Broach.

"I have a patient whose family calls every day. They already have enough to worry about without worrying about paying for care," Broach said.

A resolution that would reverse the elimination of the Medicaid hospice benefit is before the Senate Finance Committee. West urges South Carolina residents to contact state officials and ask that the cuts be reversed.

"It's a moral issue," Broach said. "How we treat our sick and dying says a lot about us as a society."

Brandy Graham said she is hoping that the elimination of hospice coverage won't end Makaylah's hospice care. "I don't know what I'd do without them," Brandy said.

Makaylah has missed developmental milestones, such as crawling and being able to hold her head up. She suffers from breathing difficulties, has fluid buildup around the brain and has a shunt in her head.

The care would be difficult at home without hospice, Brandy said. She and Makaylah often spend their days at the Rock Hill home of Brandy's mom, Debbie Huffstetler, when Brandy's husband is at work.

Kornegay, who cares for Makaylah at the Huffstetler's home two or more days a week, said she has developed a special bond with the family over the months.

"This is truly my family," Kornegay said as she measured Makaylah's head circumference to check that the shunt is properly working.

Said Huffstetler: "God has sent her to help us. She's been here for us."