NORWALK - Silvia Naranjo, a commercial cleaner from Stamford, cried Thursday night as she told the audience in City Hall about her 2-year-old son Jaidon's struggle with Leigh's disease.

The rare nervous system disorder was first diagnosed when Jaidon stopped walking at 14 months. Naranjo, with financial support from her union's health insurance, now takes her son for regular costly treatments at Columbia University.

"It is not easy being a single mother caring for a sick child. No mother wants to see her child suffer," Naranjo said through a translator. "But at least I don't have to worry about how I'm going to pay for his treatment. . . . Health coverage is a blessing for my family, but it shouldn't be a luxury."

Naranjo was one of several speakers at the public hearing hosted by the HealthFirst Connecticut Authority.

The group, created by the General Assembly last year, has been charged with recommending to state lawmakers before year's end ways of providing affordable, quality "universal health care" to all residents.

Last night's event, attended by about 60 people from Bridgeport to Stamford, was the second of nearly a dozen such hearings scheduled throughout the state between now and early October.

"We are mostly here to hear from you," authority co-chairman Margaret Flinter, clinical director of the Community Health Centers Inc., said.

But first she and co-Chairman Tom Swan, who managed Ned Lamont's 2006 Senate campaign against U.S. Sen. Joseph Lieberman, laid out some recommendations the authority is considering.

Chief among those is the creation of a health care trust, similar to the Democratic health care pooling proposal Republican Gov. M. Jodi Rell vetoed earlier this year. It would provide medical coverage for state employees along with individuals, business and municipalities.

Swan said the purpose is to maximize the state's ability to negotiate cost-effective insurance policies through strength in numbers.

Flinter said the authority is also focusing on investing in more health promotion and prevention of chronic diseases linked particularly to tobacco use and obesity.
The group is also emphasizing greater use of electronic health records and better system-wide health data reporting.

"We can't do health planning or know what to invest our dollars in unless we have access to data," Flinter said.

No hard dollar amounts were provided last night, but Swan acknowledged, "We recognize it's not going to be free. . . . We think employers, individuals and government all have a role to play."

For instance, Swan said, some larger state employers must be required to provide health care coverage.

"And individuals that have an ability to pay should pay something into the health care system," he said.

Swan said the authority is also considering recommending "tax increases that will incentivize health behaviors."

Many of Thursday night's speakers shared personal stories about their own struggles with inadequate insurance and the health care system.

Jack Hickey-Williams, who runs a business consulting firm in Bridgeport, said he would have been unable to return to work so quickly after a stroke if he had relied on his insurer to pay for therapy.

"It would have taken me two years to read again," Hickey-Williams said.
But he found a volunteer who tutored him in half the time.

"I was able to go back to work in 12 months," Hickey-Williams said.

Another small businessman, Andrew Wittenstein of Weston, said one reason he gave up his 3-year-old home cleaning business last year was that he could not provide insurance for his 18-person staff.

"Employees need access to preventive care and wellness visits and continuity of care," he testified.

Loretta Jay of Fairfield said even with a "comfortable income," it is a challenge to pay medical bills related to the celiac disease which afflicts her two young boys and prevents them from eating anything containing the protein gluten, such as wheat products.

Jay, who now helps other families suffering with food allergies through Parasol LLC, said insurers should also help pay for the extra costs borne by those dealing with serious food allergies, noting it costs $9.56 to buy a gallon of rice milk her sons can drink.
"The selection of these foods is not optional," she said.

Another speaker, Stuart Greenbaum, executive director of the Child Guidance Center in Norwalk, said that agency more and more is providing behavior health services not just to children of low-income residents but of middle-income families.

"In Fairfield County, if you don't have $450 an hour, your not going to get child behavioral health services," Greenbaum said.

But he said the additional clients are putting a major strain on the center, which already does not receive adequate reimbursement for treatment.

"We can't continue to sustain this level of loss and take everybody who comes to us," he said. "Something has to give."