After Pat Hewitt's mother died in 1991, she remembers her father, Philip Cusack, saying goodbye to relatives who were heading back home. They said, "We'll call you," and he replied: "I don't know where I'll be."
Cusack, 77, had a stroke that paralyzed his right side 15 years ago, and the former toolmaker gets around with a leg brace and a cane. His daughter and her husband, Albert, realized they had three options: her father could be placed in a nursing home; he could move in with them; or they could move in with him.
"We decided he didn't need any further disruption in his life," said Mrs. Hewitt. "He'd been married to my mother for 49 years, and I just thought this would be the best place for him."
It was a major adjustment for the Hewitts to give up their five-bedroom house to move in with a parent.
"I don't want to sound like I have a halo. My father needed me, and I'm here," said Mrs. Hewitt.
She's there to set out his medicine. To get him up and dressed. To tease him, calling him King Philip, the King of Ireland. "I make sure he's clean and fed and happy," said Mrs. Hewitt, 52.
All of this was made more difficult when he was hospitalized for 10 days in February. A bowel obstruction and prostate problems were found, and Cusack had a heart attack while in the hospital. Now there is a catheter to deal with. But Mrs. Hewitt expects that to be a temporary inconvenience.
What is bothering her far more is wondering how they'll manage if outside supports are removed by Gov. Pataki's proposed budget cuts.
One of the major ones is the DeGraff Adult Day Center. Initially his daughter had to coax Cusack "to try it just one day a week for a month" she said.
Now he looks forward to the outing -- where he sees people who have become companions, where staff members fuss over him and where he has a change of scene.
"I can see the difference in my father
since he's been going there," she said. "He's become almost articulate, and he's willing to try more things."
Cusack is one of 85 registrants at DeGraff. In Western New York, approximately 2,500 people attend such centers. Some are mainly for socializing, others provide medical care and therapy.
Several years ago there was a shift to the "nursing home without walls" concept where older people could stay at home, supported by aides, meals, transportation, nursing care and therapies. And that is the system that's threatened by the proposed budget cuts to Long-Term Home Health Care and Adult Day Care programs.
When combined with matching federal and local contributions to Home Care, the total cut is more than $1 billion, according to the Coalition to Save Home Care.
"We've been extremely successful, and they say it's wonderful, but now they're going to eliminate the funding," said Marlene Marciniak, director of the DeGraff center.
Only the most frail are eligible to attend, said Kathy Pharris, director of Catholic Charities Senior Day program.
"People who leave such programs either go into nursing homes or they die," she said.
At centers such as Kenmore's Schofield Residence Adult Day Health Care, the 50 registrants get at least three hours of speech, occupational or physical therapy weekly, as well as being monitored for dental and eye care, said director Patricia Cultrara, a registered nurse.
She said the close supervision allows them to catch such problems as drug interactions, dehydration and signs of stroke. It gets people to the care they need sooner.
Medicaid pays for most participants. At social centers, the cost is $35 to $42 a day; at medical centers, where nursing and therapy is provided, reimbursement is $78.13 per visit.
Ms. Pharris, co-chairwoman of the public policy committee of the New York State Adult Day Services Association, predicts that changes are on the way -- both with method of payment and in streamlining of the system.
Means testing to determine eligibility and an increase in private payments will be instituted, bringing New York in line with what other states do, she said. Now, under the federally funded Older Americans Act, anyone 60 or older is provided certain services, free, no matter what their income, she said.
"That law is outdated," she said. "We need to set up cost sharing. Most people could afford to pay something toward the $35 a day that it costs. Maybe it's only $4, or maybe it's $20, but over the course of a year, it adds up."
She said Catholic Charities programs will continue to operate, even though a 40 percent cut is projected.
"But the same people who are cut from long-term care will qualify under other programs," said Ms. Pharris, who uses 15 funding sources for programs. "So we'll take care of more people with less money."
She also thinks that more time should be spent making plans when an individual signs up for services.
"It's an all or nothing approach," she said. "Social workers will say 'we'll do this and this and this for your mother' rather than saying 'we can do this, what can you do?' in an effort to keep the family involved.
"If you don't find out how they were surviving before, you may eliminate all the informal supports -- a daughter-in-law bringing meals over on weekends, a neighbor who's willing to check up on the person. Once families start not doing the things they'd always done, they get the feeling they aren't needed anymore."
Streamlining transportation -- one of the most expensive components in the long-term care system -- should be a priority, Ms. Pharris said.
As it is now, as many as three different transportation companies might pick up people from one neighborhood to get them to the same site, whether it's a doctor's office or clinic or day care center, she said.
"Transportation companies say that if schedules were coordinated, rates could be lowered, and they'd still make money," she said.
Long-term care providers are pessimistic about what will happen if the system is dismantled by budget cutbacks.
"I don't know what we're going to do with these people," said Ms. Cultrara. "They are afraid. They'll be home alone."
Even those who pay privately, mostly at the social centers, could be affected because without Medicaid funds most programs can't survive, administrators say.
"I don't really know if we could exist," said Ms. Marciniak, one of several from Western New York who met with state legislators recently to press their case. "We know cuts are needed, but they want to cut things that are cost effective and care efficient."
Sen. Mary Lou Rath, R-Williamsville, says the question of long-term care is a thorny one.
"We had a report from the subcommittee last week, and it's not definitive as to how it will finish," she said. "I know there will be Medicaid cuts in general, but a lot will be made up by the counties.
"Adult day services are extraordinarily important, but I can't say I'm optimistic when we are working with a $5 billion deficit. No matter where we cut, it's a problem."
Pat Hewitt, who willingly fulfills her filial duty, hopes that it doesn't become more difficult.
"I don't think I could do it 24 hours a day, 365 days a year," she said. "These programs are the mainstays in my father's life."