A home-care maze for the elderly [The Record (Hackensack, N.J.)]

Aug. 23--It took two paperwork-filled years for Marilyn Kaufman to get the state to pay for a home-health aide for her ailing father.

He died two weeks later.

New Jersey's elder-care system has long been a puzzle to many, an alphabet soup of state and federally funded programs that offer various levels of assistance to help pay for home-health aides, adult day care, assisted-living programs or other services. Many applicants complain of long delays and inflexible rules.

Now, the Christie administration is redesigning the system, hoping to create easier access to Medicaid-funded programs that help people remain in their own homes as long as possible _ and save the state the heftier cost of paying for care in nursing homes.

Lowell Arye, deputy commissioner of the state Department of Human Services, said the end result will give more options to seniors and others in need of long-term care.

"It's going to be like an 'a la carte' program, where people will be able to choose among the |different menus of services," Arye said.

But the reform stops short of funding round-the-clock-care at home, as states like New York do. And it comes with what many consider a sea change: The state will no longer manage the program; it's giving that role to private insurance companies, saying they can run the programs more efficiently.

With insurers holding the purse strings, some question whether the new system will frustrate caregivers like Vince Rovito any less than the current one does.

Six years ago, Rovito bought a split-level home in Mahwah so that his mother could live in the lower part of the house, within shouting distance of the upper floor where he, his wife and teenage son eat their meals and sleep.

Lately the delicate web of support services that Rovito has been able to weave for his 92-year-old mother _ part-time adult day care, meals-on-wheels deliveries and respite care when he's out of town _ has been stretched thin.

"She's starting to need more," he said. "I'm starting to worry about her being home by herself when I'm at work."

Rovito has been using a government-funded respite program that allows him to temporarily check his mother into a group home when he takes an annual family ski trip _ "something I really need to stay sane," he said. But he's been advised that if he applies to another program that helps pay for a home health aide to visit for a few hours each day, he might no longer qualify for the respite funding.

"I really need them both," Rovito said. "So I'm kind of confused about what to do."

The desire to keep the elderly and chronically ill out of nursing homes is shared by state and federal officials who know that, more often than not, the government ends up footing the bill for institutional care at prices that far exceed the alternatives.

The state's standard Medicaid reimbursement rate for nursing homes is $210 per patient per day, or more than $76,000 a year. Roughly two-thirds of New Jersey'sMedicaid spending on long-term care goes to care provided in institutions. In 2011 _ the latest year for which figures were available _ $1.74 billion was spent on care provided in nursing homes, while $837 million went to home and community-based services.

For more than a year, a steering committee in New Jersey has been meeting to hammer out the details of the new system that would help the elderly remain in their homes longer. The state is promising to fix what many see as the chief flaws of these Medicaid-funded programs: long delays in getting approval; rules that don't allow participants to set the schedules for when they need help at home; restrictions against requesting a certain kind of assistance from one program and a different kind from another.

The state has overhauled the system before, with mixed results. Four years ago, in an effort to control swelling Medicaid costs, it merged three Medicaid-funded programs _ all offering alternatives to nursing homes _ into one. The result was Global Options for Long-Term Care.

The number of older New Jerseyans enrolled in the program grew from 11,000 in 2008, to more than 17,000 in 2012. Last year, more than 1,000 Bergen County residents and 600 Passaic County residents participated.

But many families find the application process for Global Options too daunting, and the benefits too limiting.

"Families should be encouraged to keep their loved ones at home because it costs less money than a nursing home," said Dorrie Lubowski, a Hillsdale resident who cared for her mother for nearly 10 years before her death in April.

"But these programs are so rigid that they make it hard for families to do that," she said. "It ends up being easier for a lot of people to just put their loved one in a nursing home _ and then the state ends up paying the bill for that."

Kaufman, who lives in the city of Passaic, worked for two years to get her parents enrolled. It was a difficult process, she said, because the state requires five years' worth of bank and other records to prove that elderly residents haven't given their money away to their adult kids.

Her father died three years ago, just two weeks after his application was finally approved. Her mother, who had suffered a stroke and was paralyzed on her right side, was deemed eligible for five hours of home-health-aide assistance daily _ but the aide was only permitted to come during the day.

Kaufman and her brother paid out of pocket for aides to remain with their mother for more hours until the elderly woman's death last summer, but she said it would have been far cheaper to hire aides in 24-hour increments, or to use the state dollars to fund her care on the weekends.

Robert Romano, a Paramus elder-law attorney, who counsels people on how to apply for Medicaid benefits, says he has generally advised clients not to bother with Global Options because they are only eligible if their savings and assets (excluding their homes) are as low as $2,000.

"Most people have given up on Global Options," Romano said. "What they find out is that even if they've exhausted their assets to the point where they qualify for the program, it won't pay for all the care they need to remain living in their homes."

And if an elderly person has spent all their resources trying to pay for care at home _ and that care is no longer going to be enough to keep them living independently _ they risk being turned away by some of the better nursing homes, Romano said.

"If they qualify for 40 hours of care a week, what happens when they start to need 41 hours of care, or when they need someone to be with them 24 hours a day?" Romano said. "They end up forced into a nursing home, and then they don't even have resources to make sure they can get into the nursing home of their choice."

Many nursing homes require that someone be able to pay cash for at least two years before having to apply for Medicaid, he said.

In his view, then, "it just seems like the Medicaid program wants to pay for people to be in nursing homes more than it wants to pay for them to be cared for at home."

Last October, the federal government approved the state's plan to create one "comprehensive Medicaid waiver program" and to allow the four insurance companies that manage other parts of the state's Medicaid program to oversee it. Beginning Jan. 1, Global Options will be folded in with other waiver programs that offer services to people with traumatic brain injuries, AIDS and other conditions.

The change should provide more options to those who need help, Arye said.

For example, a stroke patient wouldn't have to choose between getting physical therapy or private-duty nursing offered under different programs for people with disabilities. And recipients would be offered one option in which they "self-direct their benefits," meaning they could set the hours of the aides who are paid through their benefits, Arye said.

Other planned changes include allowing applicants to begin receiving services before their financial reviews are completed. But recipients will not be eligible to receive 24-hour-a-day home care because New Jersey's program is meant for people who have family members looking out for them or "some natural supports in the community," Arye said.

Skeptics have raised concerns about the changes, in particular what will happen when for-profit companies are issuing the approvals and denials.

The AARP, one of the few consumer voices on the state's steering committee, is already calling for legislation to set up an oversight panel for the managed-care companies to ensure they don't cut reimbursements and limit access to care.

"We're not opposed to managed care," said Evelyn Liebman, the AARP representative on the committee. "We think that it could be positive for consumers, but there has to be strong consumer protections and adequate oversight."

Arye said the state plans to use part of a $110 million federal grant to establish an oversight division for the insurers.

Liebman said advocates are still waiting for the state to reveal "the nitty gritty of the contracts" that will shape how the program functions. "It is a very big change, and I think that it's fair to say that New Jersey, like many states around the country, is in some ways figuring this out as we go along," she said.

___

(c)2013 The Record (Hackensack, N.J.)

Visit The Record (Hackensack, N.J.) at www.NorthJersey.com

Distributed by MCT Information Services