The waiting game, continued

by Kristen Lombardi

FAMILY ADVOCATE: "For us, there [has been] no leadership from Cellucci," says Leo Sarkissian of ARC Massachusetts. "He has pushed us away in favor of other things."

It was in desperation over such situations that five wait-listed families, working with ARC Massachusetts, sued the state. In March 1999, McKittrick filed the class-action lawsuit Boulet, et al. v. Cellucci on behalf of the thousands of families still waiting for residential and day-treatment services -- thus taking Cellucci, the DMR, the Executive Office of Administration and Finance, the Executive Office of Health and Human Services, and the Division of Medical Assistance to task for ignoring the Medicaid mandate.

Given how long the DMR has recognized the waiting-list problem, you might expect the state to settle the case. But rather than work to accommodate the families, the Cellucci administration has fought the lawsuit at every procedural step. In a well-reported and embarrassing turn last March, it was revealed that state officials had actually tried to strike a deal with the federal government to thwart the plaintiffs' efforts. At a hearing, Woodlock found that officials had secretly attempted to limit services for the mentally retarded by getting federal authorities to accept a new clause that would make such services dependent on "available state appropriations." The judge blasted the state, calling its actions "bush league" and "outrageous." And he criticized the new language as an "escape hatch" to avoid liability. The incident led to changes in the lawsuit and postponed the verdict by five months. As Leo Sarkissian of ARC Massachusetts says, "The administration's foot-dragging has characterized the whole damn case."

That said, the Cellucci administration, represented by the Attorney General's Office, has never disputed that families on the DMR waiting list are eligible for Medicaid services, or even that some have been denied assistance for 10-plus years. Instead, the state has argued that the residential programs that families prefer aren't covered by Medicaid. In other words, families are getting services they need, as opposed to the ones they want. (Stephen Bilafer, a spokesperson for the AG, declined to comment because the lawsuit is still pending.)

STILL WAITING: Fred Studley (left) and his wife, Fay, have spent five years on a DMR waiting list for services for their daughter Bridget.

This response has sent a stinging message to the wait-listed families. "The judge has said yes," Fred Studley says with a sigh, "but the state has said no." And that, of course, means more time without support. More time that an 80-year-old must rise at dawn to help a 43-year-old get ready for work. More time that a retarded adult must remain isolated at home. To the Studleys, the Sullivans, and others like them, the state's alternative amounts to a hollow victory.

Despite the apparent shortcomings of the state's alternative, though, Tummino of the DMR maintains that the department is working on long-term solutions. Officials, he says, expect to seek additional funding over the next three years. "We cannot say with certainty what we will do," he adds, "because it depends on future resources."

Still, he contends that the department, at least, stands committed to solving the problem. "Lawsuit or not," Tummino says, "we appreciate what families do for their children. We assure them the wait list continues to be a top priority for the DMR."

To be fair, parents of retarded adults don't deny that Governor Cellucci inherited the waiting-list problem. Nor do they dispute that the legislature has helped perpetuate it because it hasn't fully funded services for wait-listed people. But what families have seen from the state's top leader must be described as disappointing at best, and negligible at worst. Consider the DMR three-year plan that has moved 1238 families off the list. In fiscal years 1999 and 2000, the governor proposed in his budget just half of the yearly $10 million called for by the plan. The legislature restored the line item to its full amount. And this year, while the lawsuit was pending, Cellucci again offered a mere $5 million for the waiting list -- even though the state has a budget surplus in the millions. "Cellucci could have said to families, `This year we can and will help you,' " says Theresa Varnet of ARC Massachusetts. "Families were made to feel devalued instead."

What has hurt families the most has been the governor's long silence on the waiting-list issue. Advocates and families involved with the lawsuit say that even before the suit was filed, Cellucci and his staff failed to return their phone calls. Sarkissian recalls that in February 1999, he circulated the soon-to-be-official legal brief around the halls of the governor's office, and suggested that the families would prefer to settle. Both McKittrick and Sarkissian say no one responded.

After Woodlock issued his ruling -- and established what should be a pressing state priority -- Cellucci still said nothing. By then, the governor, among others, was caught up in the rush to deliver $240 million in public funds to the Red Sox before the budget session ended. "For us," Sarkissian says, "there [has been] no leadership from Cellucci. He has pushed us away in favor of other things."

Cellucci spokesman John Birtwell contends that it would be a gross overstatement to say his boss doesn't care about the state's retarded citizens, particularly in light of pending litigation. "Cellucci would never speak [about the lawsuit], because he wouldn't want to get in the way of the attorney general," he explains. Since Cellucci has assumed the governor's office, Birtwell adds, the governor has committed money every year to abolishing the waiting list, thus showing "a solid track record."

But when asked why the governor hasn't put forth a plan as aggressive as those of other GOP governors in New York, Florida, and Pennsylvania, Birtwell declines comment. "I don't want to prejudge the litigation," he says. "We will find out from the lawsuit what commitments will be needed."

For now, then, the Sullivans and fellow parents of mentally retarded adults must wait for answers at least until September 27, when Judge Woodlock will preside over a hearing to deal with the state's response to his ruling.

Anita Sullivan knows that she can wait a few more weeks, even a few more months. But she cannot wait forever. Not when she and thousands like her have the force of law behind them. "People feel like there is always a cause or sob story," she says. But, she asks, "Would you want to come live with me?"

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Kristen Lombardi can be reached at klombardi[a]phx.com.