Families Buckling Under Cost Of Caring For Sick Children Get A Boost From State Lawmakers

By Noreen Gillespie

Associated Press

PLAINFIELD — Like the mother of any 2-year-old, Renee Mirante is afraid to take her eyes away from her daughter for too long. But she has more reasons to worry than most.

Madeleine has chronic kidney disease. Her stomach does not work, so she wears a purple backpack with a feeding pump and tube. When the tube comes out — it can happen while she is playing or sleeping — the family rushes the curly-haired toddler to the emergency room.

She needs 48 doses of medication daily. Some days she vomits 30 times.

“We’re up all day, we’re up all night,” Mirante said. “She’s a very active 2-year-old. She needs constant eyeballs on her at all times.”

The Mirantes are among 238 Connecticut families on a waiting list for a Medicaid waiver and state lawmakers are considering expanding it to help with health care costs for children with developmental disabilities or other special needs. The move comes as other states consider cuts to the federal program.

New Hampshire recently weighed reducing the number of families enrolled and imposing premiums. Rhode Island also suggested imposing fees, but later withdrew the proposal.

“There are kids out there who absolutely are tough kids to take care of,” said Connecticut state Sen Edith Prague, a Democrat. “The families are using their private insurance, but many of them have run out.”

The Katie Beckett waiver, named for an Iowa girl who led President Ronald Reagan to change Medicaid rules in 1981, helps families who would not normally qualify for Medicaid to get the necessary funds.

Connecticut can help up to 200 families under the waiver program, but budget constraints only allow for 125.

Democrats have proposed spending $2 million to help more families enroll, but the proposal’s fate is uncertain as Connecticut’s Democrat-controlled General Assembly and Republican Gov M. Jodi Rell try to compromise on competing budget plans.

“There are a million fabulous programs that would be great to pay for,” said Rich Harris, a spokesman for Rell. “Unfortunately we don’t have the money to pay for them all.”

Advocates for families, however, say if they cannot get help when they need it, children often end up living in hospitals. Insurance coverage runs out for some families, and parents frequently quit their jobs or divorce. For most families, even inquiring about the Katie Beckett waiver is already a last resort.

“When the families get on the waiting list, they’re in a crisis mode,” said Karen Zrenda, co-chairwoman of the state’s Family Support Council. “Their kids are either in the hospital or they have the kids home and they can’t do it anymore.”

In the Mirantes’ case, financial problems have strained the tie between Renee and her husband, Christopher.

Though the family has insurance, it is not enough. Madeleine’s daily growth hormone costs $223 out of pocket each month, plus dozens of co-pays for doctors and specialists. She needs a wheelchair, but they cannot pay for it.

“It’s stressful. Staying up all day, staying up all night, I didn’t see my husband,” Mirante said, adding that sometimes, she cannot take a shower or find just five minutes to relax. “You can’t be a family without the extra assistance of help.”

Last year, the couple considered divorce as they faced caring for Madeleine and raising two other daughters. Married, they made too much to qualify for state assistance. Divorced, it might be possible.

Doctors believe that 2-year-old Madeleine is the only child in the nation with her particular diagnosis, which includes acid reflux disease, intolerance to milk protein, diabetes, and anemia. One of her kidneys, torn and poorly functioning, shriveled to the size of a pea when she was a baby. A transplant for the other kidney is in the near future.

Mirante hopes the measure is passed in time to help her child.

“It may not benefit my family by the time this goes through, but maybe it will help someone else,” she said.