Balancing act

By KEVIN LANDRIGAN

octors told Millie and Mark Duvault that their son Austin probably would die before he turned 3 due to a rare, infantile epileptic condition known as Early Myoclonic Encephalopathy Syndrome.

Austin, now 10, is clinically blind, mute, mentally retarded and prone to as many as 30 seizures a day, which can cause bronchial spasms because his airway gets easily blocked.

All of Austin’s meals are pureed because he can’t swallow lumpy foods. He needs an intravenous central line to run into a vein near his heart to prevent his deficient circulatory system from collapsing and a G-tube inserted into his stomach to take liquids and pills.

But at the sound of his mother’s voice, Austin opens his soft brown eyes even wider and smiles in her direction.

“The only thing he gives us is unrelenting love, and it’s enough to get me through every day,’’ Millie Duvault said during an interview last week at her Litchfield home.

Austin takes Botox for the pain from a dislocated hip because his doctor believes more damage would result from his seizures if he were placed in a cast.

Austin, who only weighs 40 pounds, requires round-the-clock nursing care that is now at risk in the wake of budget cuts proposed by Health and Human Services Commissioner John Stephen.

“I’m really worried most for the families of newborns with serious conditions like our Austin. There’s no way he would still be alive without the nursing care we have gotten,’’ Duvault said. “The state looks to pull back its support and for all of us it’s a very scary thought.’’

On Wednesday, the Legislative Fiscal Committee will begin its discussion of Stephen’s proposals to trim $20 million in state spending over the next two years.

One of the more controversial proposals is to dramatically pare down the number of families like the Duvaults who aren’t poor enough to qualify for Medicaid but receive services under the Katie Becket program because they have children with severe disabilities.

“This is a very difficult process we’re going through, but a lot of people have said we were very fair in how we are making these decisions,’’ Stephen said Friday.

“This program has grown exponentially and without specific authorization by the Legislature. That’s why I’m asking the Legislature for guidance on what level of support they want to provide. It’s my duty.’’

To scale back this program, Stephen must get approval from a legislative oversight committee to change agency rules. He estimates the state would save $500,000 by reducing the number of families served next June 30.

Close calls

The Duvaults are believed to be one of the last families in the state with health insurance that pays for so-called “block nursing care,” 16 of the 24 hours they need for Austin.

The state’s Katie Beckett program supplies the other eight hours of nursing each day.

“There have been so many close calls where he has been so close to death. If it wasn’t for the nursing, I would not have known how sick he was,’’ Millie Duvault said.

Cigna HealthCare, the family’s insurer, is terminating its coverage for nursing on Dec. 31, so the Duvaults must turn entirely to the state program for assistance – precisely when Stephen looks to reduce the number of families who will get these services from 1,200 to 250.

“From 1993 until 2001 we had full coverage under insurance, which only seemed fair if we were paying our premiums that we could get coverage,’’ Duvault said.

“We didn’t want to have to rely on the government.’’

The couple has two other children who are healthy – Justin, 15, and Alexa, 13 – and Austin’s mother believes Austin was telling her something was wrong while he was in the womb.

“It was more like a hiccup and then a kick I kept feeling. I thought nothing about it at the time, but I think he was having seizures in utero,’’ she said.

Millie Duvault decided to go back to school and become a registered nurse, both to help care for the child and know the challenges the nurses faced.

“I needed to see both sides. I also wanted something to fall back on in case Austin was taken from us at such a young age,’’ she said.

Duvault had to leave the job when a nursing shortage left her without enough care for Austin at critical times during the day.

Her husband works as a software engineer for the Hewlett-Packard Co. in Nashua.

“We’ve got good coverage now and some of the same nurses for the past several years,” she said. “He’s so involved that some just couldn’t deal with the level of care required for him and had to quit.’’

The constant care comes at a price of their personal privacy.

“My husband and I can’t even have an argument in private,’’ she said.

Her father, Fred Simon of Tewksbury, Mass., led a community fund-raiser that paid to build and equip Austin’s room off the garage.

“I want to give my other children a normal life, but it’s hard. My family has been very supportive, and I can recall my _sister telling me things Alexa did when she was young,’’ _Duvault said.

“I couldn’t remember because I wasn’t there.’’

Growing numbers

Stephen said the program has grown from $4 million a decade ago to $20 million today. The 1,200 families on the rolls are four times the size of those enrolled in Massachusetts, a state six times the size.

The program began in 1989 after the federal government allowed states to offer this optional benefit under Medicaid.

State laws don’t outline the extent of the services, but 12 pages of administrative rules spell them out.

“My view is the statutes should direct policy and the department should implement that policy,” Stephen said. “Yes, administrative rules need to give the agencies flexibility, but they should not constitute the policy in the absence of a state law.”

The commissioner has asked for a performance audit of the program.

“We need to have a better understanding for what has driven up these costs,’’ Stephen said.

Supporters at the Disabilities Rights Center question if the total cost includes more than $11 million a year that the federal government and local property taxpayers share supporting Medicaid services for these children to attend school.

House Democratic Leader Peter Burling of Cornish said he is determined to fight any proposals that shift costs to local taxpayers.

“If we put more seniors or disabled children into institutions or nursing homes, the bill gets moved to the county property taxpayer, and that’s all of our constituents,’’ Burling said.

Linda Steir of Atkinson has a 17-year-old daughter in the program with cerebral palsy who just finished taking her written driving exam.

“When she was first on the program in 1991, our insurer, Blue Cross, paid 80 percent of durable medical equipment. Now it pays a $1,000 cap each year, and she needs an electric-powered wheelchair that costs $11,000,’’ said Steir, an advocate for other families.

“You can’t compare New Hampshire to Massachusetts since that state has several insurance companies that still provide these benefits. We have two companies writing policies in the whole state and both are now out of the coverage business.’’

Duvault believes Austin would not survive in an institution.

“The patient-per-nurse-ratio is so high, and he is so complicated that he could be gone before they even knew it,’’ she said.

“One time he had a central line infection and the only clue we had was one 102 degree temperature that went down below 100 every time after that. The nurse picked up on it, we took him to the hospital and that saved his life.’’

During the interview, Duvault hears her son’s gasping cough and runs to find him in mid-seizure.

She cradles his chin in one hand, slowly strokes his forehead with the other and softly hums to him, eventually bringing the seizure to a quieting close.

“I don’t know why that helps sometimes,” she said, “but it does.’’