A Lifeline for Families Faces Cuts

By Robin Shulman
Washington Post Staff Writer
Sunday, December 14, 2008

NEW YORK -- Sometimes it seems as though all Doreen Tiseo does is care for her 87-year-old father, who has memory loss from Alzheimer's disease. She supervises him in the shower and gives him reminders, such as "pick up the soap" and "wash your face." In the morning, she helps him dress and slips a handkerchief into his pocket. At night when he wanders, she tells him, "It's dark out, time to sleep."

But during the day, she gets a respite to go to her job as her father attends a city-funded program. It offers people with dementia and Alzheimer's art and music therapy, lunch, physical activities, and guided discussions and socializing -- critical, Tiseo says, to keeping her father alert, happy and relatively healthy.

Now, because of a budget crisis, New York City plans to eliminate funding for all 12 of these adult day-care programs at the end of this month, saving $1.2 million before the next fiscal year begins in July. The programs, which receive most of their funding from the city, are facing immediate closure unless they can raise fees dramatically or find new donors -- in a climate in which other government agencies, corporations and individuals are also cutting back. Even then, they may be able to remain open only a few days a week.

"I don't know what I'm going to do," said Tiseo, an office manager and single parent of 51 who also supports her 20-year-old son, a college student. She said she pays $40 a day for her father to attend the program and could not afford $15 an hour for in-home care. "If he was to stay home, he would spend all his time in front of the TV," she said. "That would probably further the progression of the disease."

In other families, adult children said they are considering quitting their jobs to give full-time care because they do not earn enough to hire someone else -- and some are raising the idea of sending their parent to a nursing home.

"The impact will be catastrophic," said Ellen Sarokin, the chief social worker at the Selfhelp Alzheimer's Resource Program, which Tiseo's father attends in the Bayside neighborhood of Queens. Few other programs serve middle-class families, she said. Most are for people whose incomes are so low they qualify for Medicaid or high enough that they are able to pay more than $100 a day for care. "We have nowhere to refer them to. Every place I've called is either in the same situation or predicts it will be soon."

Faced with the need to make cuts, it seemed better to "surgically eliminate" these small adult day programs, said Edwin Mendez-Santiago, who recently resigned as commissioner of the city's Department for the Aging, rather than programs such as home-delivered meals, which reach 17,000 people daily, or senior centers, which serve 20,000 each day.

Mendez-Santiago said the department's staff would help redirect the 300 or so people who attend these programs to state-funded, Medicaid or private-pay day-care programs, or to home-care options. But he acknowledged that only a portion will qualify for Medicaid and that state budgets are also facing reductions.

In a city bracing for more budget cuts, there are fears that small programs such as these, which serve some of the most vulnerable, will be the first to go. And across the country, as at least 43 states face budget deficits in 2009 or 2010, these questions will come up again and again: What are essential services? Essential to whom? How do we define in budgetary terms what keeps individuals thriving and surviving and families intact?

Just before 5 p.m. on a recent Wednesday, the sun was low over neat, small, detached houses in the Flushing neighborhood of Queens as Tiseo drove home from her job to her father, Joseph Parisano, and the real work of her day.

When she walked in, her father was sitting in the darkened living room in the single easy chair, facing the television. A van from the program had dropped him off at home, where Tiseo's son was waiting.

This evening would be like most evenings. Tiseo would ask her father about his activities at the program. He might tell her about a movie he saw or a game of pool he played. She would cook dinner, maybe macaroni with peas. She would give him his medications; he takes more than a dozen a day. She would clean him. She would do his laundry. She would make sure he was occupied and safe until he fell asleep.

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