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

INADEQUATE RESPONSE: families aren't happy with Governor Cellucci's failure to outline a plan for dealing with the 2600 families on the DMR's waiting list.

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.

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