Posted on Thu, May. 08, 2003
Boy may be heading home
Family forced to fight for waiver to cover care outside hospital
Beacon Journal medical writer
A plastic pig with fluttering wings hangs from a string in Brady Eikleberry's hospital room, the only home he's known since his birth more than a year ago.
His mother, Nikki, hung it there because she was beginning to think she'd be able to take her son home only when pigs fly.
But after months of fighting for special funding known as a waiver so Brady can go home, his parents might finally be close to winning the battle.
The Eikleberrys recently got a letter from the Ohio Department of Job and Family Services informing them that a waiver spot might be available for Brady.
A spokesman said the department began sending out thousands of such letters last week to try to get waivers for qualified people.
If all the paperwork goes through, Brady goes home.
"Look, Brady's going to go home, because pigs are flying,'' Colette Benincasa, one of his two primary nurses at Children's Hospital Medical Center of Akron, said earlier this week with a grin.
Brady was born a year ago in March with several medical problems, including two holes in his heart and a malformed esophagus and trachea.
After eight surgeries and months of recovery at Children's, he was ready in December to go home on a ventilator, his doctors said.
But the cost of his care kept him hospitalized.
Brady used up his $1 million private health insurance benefit, and his middle-class parents, Rick and Nikki, couldn't foot the bill for his care on their own.
Once Brady's insurance ran out, he was enrolled in an institutional Medicaid program to pay for his hospital care. But that program pays for care only if he's hospitalized or in a long-term-care facility.
To take their son home, the Eikleberrys need to have him approved for a special, limited Medicaid program called the Ohio Home Care Waiver. In January, more than 3,000 people were ahead of him on the waiting list.
In the meantime, the state has been paying more than $80,000 per month for Brady's hospital care. The cost if he goes home: less than $20,000 per month.
"It's good news for us that he has that potential slot,'' his father said. "It's just all the paperwork and process.''
Everyone who received a letter from the state needs to fill out a new form if they want to pursue waiver funding, said Dennis Evans, spokesman for the Ohio Department of Job and Family Services.
Afterward, it should take about six weeks to verify eligibility and begin enrolling people in the program.
"At this point,'' Evans said, "we think that it's a good possibility that if somebody meets all the requirements, by the time the processing is done, there should not be an additional wait. It's not going to be a long time or another six months to a year or anything like that.''
Evans declined to discuss Brady's case specifically, citing new federal health-care privacy regulations that went into effect last month.
The Eikleberrys are optimistic that Brady eventually will get off his ventilator and have a normal life.
But for the near future, Brady will need around-the-clock supervision to make sure his airway doesn't get clogged with mucus. He'll also need to use a ventilator until he's at least 2 years old to keep his trachea from collapsing.
His parents had the electrical system in their house upgraded six months ago in preparation for his homecoming.
"We're ready for him,'' his father said.