The waiting game, continued

by Kristen Lombardi

TWILIGHT YEARS: Anita Sullivan (left) and her husband, Richard, don't know how much longer they can continue to take care of their children Richard and Margaret -- both of whom need round-the-clock care.

When Woodlock issued his landmark decision, though, he gave the Cellucci administration a temporary reprieve. If the state could not meet its obligation within three months -- and 90 days isn't much time to find residential beds for some 2600 people when only 14 beds are available today -- the judge said he'd consider an alternative plan, complete with its own time line.

Two months after Woodlock's ruling, however, the state has failed to put forth a credible alternative. The Cellucci administration's proposal includes a step that the DMR had already planned to take this year to reduce its waiting list: spending $8 million to serve about 200 people. Yet it doesn't explain how and when the state intends to deal with the thousands of other delayed cases. Not only that, but some of the statements outlined in the proposal come across as defiant. Take, for example, the contention "The court should not enter an order with a specific time frame . . . because DMR has a plan." One government official, who has followed the waiting-list lawsuit and read the Cellucci alternative, characterized the administration's plan this way: "The state argues it's doing what it can, so why don't you, Mr. Judge, just leave us alone?"

Lawrence Tummino, who heads DMR operations, admits that the state's answer to Woodlock's decision lacks a concrete, long-term strategy for wiping out the department's waiting list. But, he stresses, that doesn't mean that the state will just ignore families. Department officials presented their $8 million plan to reduce the list because, he says, "we know what resources we have and what we can do with them." The alternative isn't meant to go further. "That," he explains, "reflects our interpretation of the judge's order."

Woodlock's view of the agency's interpretation should become clear next Wednesday, when he considers the state's alternative at a hearing. He's expected to make a final decision in the case soon after. The judge may order the state to abide by his July verdict, or he may modify the time line himself. Either way, Woodlock could force the state to deal with its waiting list much faster than it ever anticipated.

Perhaps the Cellucci administration would eliminate the DMR waiting list faster if officials walked a mile in Fred Studley's shoes. The 55-year-old Abington father of three considers himself fortunate. His daughter Bridget, 26, is mentally retarded and has cerebral palsy, but she is working toward independence. She attends a day program, where she makes jewelry. She calls bingo games at a local nursing home. And she goes solo to her favorite haunts -- the coffee shop and the cleaner's. "Bridget has 120 phrases and questions," Studley boasts, "and her world revolves around them."

But Bridget, a named plaintiff in the DMR lawsuit, lashes out when confronted with change --and her temper is getting shorter as she gets older. Once, for instance, Bridget's ballet class was canceled. In response, at the dance studio she threw a tantrum worthy of a two-year-old. When she was finally coaxed into the car to go home, Bridget, still angry, shattered the car's windshield with her hand. Incidents like these convinced Studley and his wife, Fay, that they had to place Bridget in a community-based residential program, where she could receive 24-hour care and skill-building assistance. And so they applied for help from the state.

That was five years ago.

Every year since then, the Studleys have played out the same familiar scenario: DMR officials tell the family it won't get services; Bridget's unmet needs become bigger; and her parents grow increasingly frustrated. "After years of having to care for a childlike adult," Studley says, "the walls can get pretty close."

Since the late 1980s, the DMR has kept a backlog of cases, most of them similar to those of the Sullivans and the Studleys: elderly parents seeking residential services for their retarded kids. Throughout the 1990s, the waiting list for these programs grew by 13 percent each year. Most of the increase has come from what's known as the "Turning 22" population: the large number of young people who, at age 22, lose their special-education entitlements and begin signing up for Medicaid mental-retardation services. By 1997, the DMR waiting list hovered around 3400.

By the time the lawsuit was filed in 1999, the list had dropped to 2600, thanks to a plan put in place by the DMR. Targeting the delay as a top public-policy issue in 1996, department officials had introduced a three-year plan to reduce the rolls. Under the auspices of the proposal, the state appropriated $27.8 million over three years to deal with the waiting list, enabling the DMR to help 1238 retarded citizens. Meanwhile, the legislature allocated another $33.1 million for the agency to address the Turning 22 crowd -- specifically, to prevent as many as 1046 young adults from languishing on the list. But despite these efforts, the list remains at just over 2400 today, according to the DMR. What's more, the families still on the list are the most vulnerable ones of all. They're headed by aging parents who are overlooked because they haven't faced what the DMR considers a crisis -- in short, parents haven't yet gotten sick or dropped dead.

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Kristen Lombardi can be reached at klombardi@phx.com.