The waiting game

Some parents of retarded adults are forced to wait more than 10 years
for support services from the state. A US District Court judge says
that's illegal. But the Cellucci administration doesn't seem to care.

by Kristen Lombardi

IMAGINE THIS: you are 79 years old. You take pride in your health. You look good, too -- and not just for your age. Every morning you rise at 5:30 to wake your children. You have four of them, but two still live at home. Your son Richard is 43 years old. He has Down syndrome. Your daughter Margaret is 42. She is severely mentally retarded.

Every day, at 6:45 a.m., you bathe Margaret. You scrub her ears, clip her nails, wash her hair, brush her teeth, and rub lotion on the dry, flaky patches of her skin. You dress her. Then you prepare breakfast: pancakes, fritters, omelets. You cut everything into bite-size pieces. At times, you have to feed Margaret. You never eat first.

Monday through Friday, Richard goes to work at a nearby metal factory, where he performs odd jobs. Margaret attends a day-treatment program.

You don't resent the care you and your 80-year-old husband, Richard, must give your grown children. Yet a depressing thought constantly nags at you. You are going to die someday -- perhaps soon. You worry about what will become of Richard and Margaret. Will they understand that you didn't mean to abandon them? Will they be taken care of? Will they be safe and happy?

So one day in 1994 you do what you never wanted to do: you fill out an application for Richard and Margaret to enter a Department of Mental Retardation (DMR) program that provides housing for retarded adults. You submit the application and then wait for the state to tell you what to do next.

You're still waiting.

A RECENT court ruling has given Anita and Richard Sullivan, the Walpole parents of Richard and Margaret, some hope for relief. Last July, US District Court judge Douglas Woodlock ordered that all mentally retarded adults eligible for the federal Medicaid program in Massachusetts be taken off the state's waiting list and provided housing or support services within 90 days. The court mandate came after families sued Governor Paul Cellucci and various state agencies for denying assistance for years -- in some cases, more than a decade -- in violation of the federal Medicaid Act. Some 2600 people, including Richard and Margaret, are currently on that waiting list, according to the lawsuit.

In handing down his July 14 ruling, Woodlock has made history. He's become the first judge ever to require a state to offer community-based, residential services within a specific time period. And, more significant, Woodlock has made one thing clear: for too long, the Commonwealth has ignored federal Medicaid mandates and illegally forced parents to care for their retarded children without the services to which the law says they are entitled.

To be sure, Massachusetts isn't the only state that has failed to give parents like Anita and Richard Sullivan much-needed services. The national advocacy group ARC (formerly the Association for Retarded Citizens) describes the waiting-list situation across the country as a "crisis for America." ARC estimates that as many as 224,000 people in 48 states are stuck on lengthy lists.

Frustrated with the delay, families in New Mexico, Oregon, and Florida have filed lawsuits similar to the one just decided in Massachusetts. And a handful of governors -- all of them Republicans -- have taken the lead in facing the challenge head-on. Prodded by several lawsuits, Florida governor Jeb Bush allocated $200 million last year to set up more housing for the retarded. In August 1999, New York governor George Pataki hammered out a five-year, $130 million plan to help the 8100 retarded adults languishing on his state's list. And earlier this year, Pennsylvania governor Tom Ridge became a virtual legend in the mental-retardation community after unveiling a five-year plan that serves 14,000 people at a cost of $853 million.

But there has been no such reaction from the Cellucci administration -- even after Woodlock's landmark decision. The ruling, undoubtedly, creates a real problem for the state. Eighty-five percent of the cases on the DMR waiting list require residential placements at an annual cost of $60,000 to $80,000 each. "This is a big-ticket money item," says Neil McKittrick, the Boston-based Hill and Barlow attorney who won the class-action lawsuit against the state. He pegs the final price for getting rid of the waiting list at $150 million. At least 40 percent -- or $60 million -- would be reimbursed by the federal government. Yet the mandate could cost the state as much as 15 percent of the DMR's $905 million budget.

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 steps that the DMR had already planned to take this year to reduce its waiting list: spend $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.

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.)

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?"

Seth Gitell can be reached at sgitell[a]phx.com.