The governor wants to require contributions from families who make too much to qualify for Medicaid, but receive state-paid health care because of children's handicaps.

01:00 AM EST on Thursday, March 10, 2005

BY BRUCE LANDIS
Journal Staff Writer

PROVIDENCE -- Governor Carcieri's tax-containment plans yesterday ran headlong into a crowd of angry parents who said during a budget hearing that the governor is balancing the budget on the backs of their severely handicapped children.

They got some sympathy from the House Finance Committee, which was holding a hearing on the Department of Human Services budget. One committee member, Rep. Peter L. Lewiss, D-Westerly, repeatedly called heartless the governor's plan to impose a $100-a-month copay on the children's state-paid health care.

Committee Chairman Steven M. Costantino, D-Providence, said he was skeptical about a number of Carcieri's cost-saving moves, which include looking for program beneficiaries whose needs can be met through less expensive services.

In at least some cases, Costantino said, he suspects that health insurers should be paying for the services that disabled children need, not the state or the parents; that the savings Carcieri is predicting won't materialize; and that cheaper, alternative services Carcieri wants to rely on may not be available.

Costantino said he couldn't say what the budget will ultimately contain. But he said, "This Assembly's tradition has always been to protect children. That's always going to be a priority of this Assembly."

The subject that stirred the most controversy yesterday -- the one Lewiss attacked -- was the governor's plan to impose a fee on families benefiting from an exemption from Medicaid income limits.

Called the Katie Beckett Option, it benefits about 1,300 children under 18 who are disabled to the point of needing institutional-level care. It qualifies them for Medicaid without their families' meeting the income standards that normally limit Medicaid to the poor.

The $100 fee Carcieri wants to impose is part of a continuing effort by the governor to shift some government program costs onto the people who benefit from them rather than raise the state income and sales taxes.

With human-services programs, that often means shifting costs onto poor people, which brings an angry response from them and their advocates.

However, Jane Hayward, managing director of the Office of Health and Human Services, called the fees "a way to be equitable in the way we treat people we serve."

"The governor believes in copays," she said, noting that the Katie Beckett Option beneficiaries are exempt from the normal income standards.

In the case of the Katie Beckett Option, an attempt by the Reagan administration to stop institutionalizing the disabled, the parents said the costs their children's disabilities impose on them are so staggering, and their health insurance so lacking, that they care barely make ends meet even with the Medicaid help.

The administration expects to save $300,000 next year on the program.

The dozens of parents who attended yesterday's hearing said their children suffered from a variety of long-term disabilities, in many cases autism. They talked about extraordinary financial and emotional stress, about selling their furniture to pay medical and therapy bills, and about their inability to work long enough hours to pay bills because of their children's need for care.

Many had insurance, often from Blue Cross, but said it didn't cover their children's needs.

Sharon Terreault said her son Kyle, 12, gets medical supplies under Katie Beckett "that exceed my mortgage" in value each month. "How could I afford to pay that?"

Suzanne Kiniry said her son, Jesse, was in Butler Hospital yesterday, part of $5,000 in treatment for a disabling anxiety disorder in the hope that he can return home. The treatment is medically appropriate, she said, but insurance doesn't cover it, so it comes out of her pocket.

Veronica Kot said that because there was a one-year wait for the therapy her autistic 8-year-old son needed immediately, she and her husband spent $20,000 on experts to train them to provide the therapy.

Later, she said, they learned that the waiting list had grown to three years.

"This is a serious, major change," Rep. Eileen S. Naughton, D-Warwick, said of Carcieri's plan. Big health-care costs are a major reason families are forced into bankruptcy, she said.

Robert Cooper, director of the Governor's Commission on Disability, told the committee that it was really talking about keeping families together, because of the stress that having a severely disabled child causes for a family.

"This is domestic violence prevention," Cooper said, and it will pay off tenfold in children who grow up to be productive adults, rather than being institutionalized.