Appeared in Newsday
BY: Kathy Chu. Kathy Chu is a freelance writer.
EDITION: QUEENS SECTION: QueensLife
DATE: 05-21-2000

AT 65, John Deriso has become somewhat of a gadget man.

Deriso, whose imposing frame often shakes with uncontrollable giggles, keeps an array of exercise equipment in a converted bedroom in his modest Queens home.

He has contraptions to pull up his socks and button his shirts. He eats from special trays, showers in an extra-large bathroom and travels most everywhere by motorized vehicle.

But Deriso, who lives with his wife, Joan, on a tree-lined street in Howard Beach, is not a collector or inventor. He's just one of the estimated 5.3 million Americans living with traumatic brain injury who must depend on mechanical devices and the help of loved ones to get through the day.

"Everything has slowed down since my stroke," Deriso said of his 1996 injury as he sat in a wheelchair in his living room one recent afternoon. "Everything takes longer."

TBI, as this condition is called, results from an injury to the head, and causes debilitating symptoms ranging from memory loss to paralysis and brain damage. For some sufferers, life never returns to normal. Even mild cases, if left untreated, can transform life into a daily struggle to regain mental and physical control.

The most difficult part for families, after the initial shock, comes after traumatic-brain-injury sufferers leave the hospital. Then, relatives have to decide whether to put loved ones in special nursing homes - which often become defaults for those without the resources, or physical capabilities, to provide care - or to bring them home, and relegate their own lives to the back burner.

It's a necessary decision, said Veronica Gala, a state-appointed TBI resource coordinator for Queens and the Bronx, although one made easier by the availability of care facilities such as Park Terrace Care Center in Corona and the Queens Nassau Nursing Home in Far Rockaway.

But the families who care for TBI sufferers at home, like Joan Deriso, often center their lives around medical appointments, at least for the first few years.

For Susan Michalowski, this will be a way of life for a lot longer. Michalowski accepted this after her son Eric, then 19, was hit by a car in the Sheepshead Bay community on Nov. 26, 1995.

Eric, who had just graduated from high school, had been working part-time delivering pizzas and getting ready for community college. But on a sunny afternoon on Bedford Avenue, a truck collided with helmet-less Eric, who was on a bike, and abruptly ended his plans. He fell, hit his head on the asphalt, and, almost instantly, went into a coma that would last for 41/2 months.

A barrage of doctors and hospitals later, Eric regained consciousness, and came to Jamaica Hospital's TBI unit to learn to speak and move his arms again. After months of therapy, the 24-year- old reached a fourth-grade level of reading and math, could respond to questions, recognize faces and sing along to his favorite rock band, Nine Inch Nails. But Eric had reached a plateau in his recovery, and doctors told the Michalowskis to arrange for his long- term care.

A Queens or Brooklyn nursing home would have been a viable option. Eric would have continued to receive specialized care and his family could see him frequently. But the Michalowskis, of Sheepshead Bay, resolutely dismissed the idea. Living with a different, less inhibited Eric-who would scream and curse when he got excited-was preferable to not seeing their son every day, they decided. So the Michalowskis learned how to adjust Eric's catheter, bathe him and soothe him the three times each night that he woke up.

"We had no choice," said Susan, his mother. "We made the decision that we'll either sink or swim. We just wanted to normalize Eric's life."

Many families find it difficult, if not impossible, to take care of loved ones with brain injuries at home. Those with limited mobility and severe mental impediments demand around-the-clock care for which some do not have the time. Limited finances also present a hardship, sometimes insurmountable, to those families who must modify their homes-by expanding doorways, putting in ramps and widening showers-to accommodate TBI survivors in wheelchairs.

Nell Krantz of Briarwood brought her husband, Mark, 51, to Park Terrace more than a year ago, when he could do little more than blink his eyes. Hit by a car in the parking lot of the hospital where he worked, Mark suffered a brain injury in 1994 that rendered him almost completely immobile. He spent years in hospitals and nursing homes before his wife decided that the Corona facility, with its ward for the brain injured, was the right place for him.

Since then, Mark Krantz' arm and leg strength have improved, and he understands almost everything that's said or done. His wife harbors timid but real hopes of her husband's recovery, but knows she couldn't take care of him in his present condition.

"I'm a realist," Nell said. "I would never desert him, but I know that I can't kid myself about his condition."

Families who turn to nursing homes are often besieged by guilt, said Maureen Ryder, a social worker at Park Terrace, but no right or wrong decision exists in determining long-term care.

"The goal is to make the best out of a horrible situation," she said. "It's whatever works for the patient and family."

More people, even the younger population, now consider nursing homes for specialized needs such as traumatic-brain-injury rehabilitation, said Barbara Porcano, director of resident services and the TBI ward at Queens Nassau Nursing Home. This is why she, as well as other administrators, prefers to call these facilities "long- term care centers," so as to dispel the images of stodgy, final resting homes for the elderly.

"We want to help the community overcome the stigma of being in a nursing home," she said.

Porcano also oversees Park Terrace and its TBI ward accommodating up to 80 short- and long-term occupants.

Five years ago, this kind of choice was much simpler. Then, long- term care facilities catering to this population were virtually nonexistent, and families who couldn't care for their brain-injured relatives wrestled with whether to put them into general nursing homes - where TBI sufferers often had little of the physical, cognitive and psychological therapies they needed to get better - or to ship them to other treatment facilities in Massachusetts, Connecticut or New Jersey.

Today, there are eight nursing homes in the city (five in Queens) and nine hospitals (two in Queens) catering to brain-injury rehabilitation, according to Gala, the TBI resource coordinator, and many of these facilities are often full as more people learn about the condition and become aware of available treatment.

Gala credits this to the 1995 inception of a state program, which introduced her and colleague Marie Cavallo, a TBI program developer covering Manhattan, Staten Island and Brooklyn, to traumatic brain injury.

It was the mid-1980s, and Gov. Mario Cuomo had appointed health investigators to look into this population's medical care. Months turned into years and a surprising verdict finally came back: Millions of New York Medicaid dollars were being spent on treatment facilities in other states.

The state took charge of the problem, and in 1995, appointed TBI resource developers to each region. Two interrelated goals were set: Return these patients to New York State and develop resources to treat them.

Cavallo and Gala, along with their counterparts, started by tackling the problem on a grassroots level. As part of the state- initiated Project Return, they went to visit hundreds of out-of- state patients, one by one. They talked to families to find out their loved ones' needs. Then, they went to nursing homes and medical facilities, such as Jamaica Hospital Medical Center, to learn from and improve upon TBI rehabilitation programs.

According to the state Department of Health, the efforts of resource developers such as Cavallo and Gala have brought back $42 million in Medicaid money since 1995. And it's helped New York to become one of the leading states for TBI care in the past five years.

"Across the United States, this is becoming a big field," said Dr. Kathryn Ko, the chief of neurosurgery at Jacobi Medical Center in Manhattan, who has treated more than 500 brain-injury patients there and at Jamaica Hospital in the past decade. "And New York City is very progressive in medicine. We're really getting there."

Maybe so, but life for the Michalowskis is still a struggle when it comes to Medicaid issues, as they fight to get more therapy for Eric, another mechanical gadget to make his wheelchair-bound life a little easier, or a transfer to a specific hospital. It's these insurance-coverage worries, his mother believes, that unnecessarily burden families trying to cope, and that can be remedied if providers educated themselves with the needs of brain injury patients.

"It gets to the point where you get tired of fighting," she said.

Joan Deriso, who cares for her husband, said she's generally been satisfied with the HIP insurance plan, part of a health maintenance organization, that has covered the family since John Deriso worked as a high school assistant principal. But she said she's heard numerous accounts of unwieldy insurance plans that can make life more difficult for families of those with brain injuries.

Recently, John Deriso had not been to physical therapy for more than two months, awaiting an appointment and referral from his primary care physician.

Many families, whether they rely on home care or nursing homes, say insurance plans often will not cover necessary treatments for TBI sufferers, or the lifetime cap will run out, leaving the once insured on their own.

Nell Krantz, whose husband is at the Park Terrace facility in Corona, said her CIGNA plan pays for medical treatment and disability insurance covers nursing home costs. But Krantz is one of the lucky ones, as many insurance plans provide only limited disability coverage.

According to the William M. Mercer Foundation, a Manhattan-based global consulting firm specializing in employee benefits, insurance plans set lifetime caps at $1 million, an amount TBI sufferers say can be depleted over time with the barrage of physical therapy and equipment needed to normalize life.

Annually, the foundation conducts surveys on the amount of insurance coverage companies provide to employees. In 1996, the most recent year for which data is available, it found that the majority of nonhealth maintenance organization plans had these lifetime coverage caps.

Many doctors said they believe that insurers also fail to provide for early care. This shortsightedness, they say, could backfire, leading to mountains of state- and company-incurred health expenses in the future. Already, traumatic brain injury costs the nation $48.3 billion a year, including $31.7 billion for hospitalization and $16.6 billion for the care of patients who eventually die from their injuries, according to the Brain Injury Association in Alexandria, Va.

"While rehabilitation is costly, it's much more costly- financially and socially-not to provide it now," said Dr. Angelo Canedo, vice president of rehabilitation services, including the TBI ward, at Jamaica Hospital.

Dr. Philip Harris, chairman of physical medicine and rehabilitation at Jamaica Hospital, said brain-injury providers often face frustrating insurance quandaries: discontinue essential treatment such as cognitive therapy, or risk not getting paid for the service because of the "wrong coding" on insurance forms.

It's a dilemma magnified when patients leave the hospital and their families must contend with insurance companies - and other problems - on their own.

"You work to take care of these people and get them to the highest level of functioning in the hospital," Harris said. "But when they leave, it can fall apart. The education stops and they can't move forward."

Patients such as 52-year-old Marvin Kalter of Melville, who was in Jamaica Hospital's ward for two months after a brain-tumor removal on Jan. 26, will need two to three days of physical therapy a week now that he's home. And he'll probably need years more of follow-up care.

It's this grueling regimen that may eventually take a toll on his insurance coverage, and on his recovery.

Said Kalter: "Nothing's the same anymore, but I need to do these things to get better."

HERE ARE the nursing homes and hospitals covering traumatic-brain- injury rehabilitation in Queens, as provided by Veronica Gala, the state-appointed TBI resource coordinator for the Bronx and Queens:

NURSING HOMES:

Queens Nassau Nursing Home
520 Beach 19th St.
Far Rockaway
718-471-7400

Waterview NursingCare Center
119-15 27th Ave.
Flushing
718-461-5000

Silvercrest Extended Care Facility
144-45 87th Ave.
Jamaica
718-480-4000

New Surfside Nursing Home
22-41 New Haven Ave.
Far Rockaway
718-471-3400

Park Terrace Care Center
59-20 Van Doren St.
Corona
718-592-9200

HOSPITALS:

Peninsula Hospital Center
51-15 Beach Channel Dr.
Far Rockaway
718-734-2000

Jamaica Hospital
8900 Van Wyck Expy.
Jamaica
718-206-6000

Part 1 of this series "Relieving The Trauma"

© Copyright 2000, Newsday Inc. Reproduced with permission. Kathy Chu. Kathy Chu is a freelance writer. The Long, Costly Road Back / Although traumatic-brain-injury patients have more treatment options, fighting for insurance coverage is often part of the daily struggle, Newsday, 05-21-2000, pp G01.