Brain-injury
patients face
quandary

As a state program is phased
out, some families say they are
unable to find comparable
services elsewhere

By Helen Altonn
Star-Bulletin

Karen Nagasawa says she's "getting very desperate" about finding rehabilitation training for her brain-injured 11-year-old son Aaron.

He is being phased out of a Hawaii State Hospital outpatient neuropsychology program that the state Health Department is closing June 30.

Nagasawa and others with brain-injured family members say they can't find comparable services in the community.

The Health Department had planned to close the program in April, saying the hospital must focus on its mission to treat mentally ill patients.

The closure was extended under pressure from the Brain Injury Association of Hawaii, legislators and families to provide more time to shift the 40 outpatients to private programs.

Patrick Johnston, Health Department spokesman, said about 10 to 15 people still are receiving services at the hospital and officials hope to place them in other programs by the end of the month.

"The fact that we've been able to move most of them out indicates that services do exist," he said.

"The issue is not only making sure they get services but that the hospital is doing what it's supposed to be doing as well."

Nagasawa said she tried calling 12 neuropsychologists listed in a Health Department letter to the families.

"None of them were very responsive. Most of them, while they were sympathetic, cannot take us in because they have too many clients or do not do that kind of treatment. The majority say the reason they won't take it is insurance won't cover it."

'A little more future'

The Health Department said all the neuropsychologists it listed are qualified to work with both children and adults, Nagasawa said. "I got one who actually told me to make a correction because he does not do child and adolescent treatment. He was upset about that."

She said Aaron has visual and perceptual problems because of a brain injury of unknown cause. For example, he couldn't copy words off a chalkboard for school assignments, she said.

He is able to do that after four years of training at the State Hospital, she said.

Also, she said, "He's not a star soccer player but he can play soccer." He learned how to follow a ball through tracking exercises in the neuropsychology program, she said.

She said the program gives those receiving services "a little more future to look forward to."

Aaron spends half a day in special education classes but the therapist said with the progress he's making he could be mainstreamed into regular classes in a year or two, she said.

Now, she said, "We don't know what we're going to do because this is the only service we have."

Joann Shimabukuro said her son Ken, 23, is being shifted from the hospital program to the Department of Vocational Rehabilitation to be placed in part-time computer work.

"It's just made an agonizing situation for us."

She said he has endurance and memory problems and he may need surgery again for a brain tumor.

But he has improved since he began going to the hospital program, she said. "He had difficulty finding his car in a parking lot or remembering when he last ate. Now he remembers most of the time."

'An enormous leap'

Ken was a presidential scholarship recipient in computer engineering, beginning his junior year in one of the nation's top engineering-specialty colleges, when doctors removed a brain tumor in 1996, Shimabukuro said.

He suffered a brain injury that left him with many deficits, she said. "After being at such a high level academically, just to take an English course -- he tried three times since January 1997 and passed just this last semester (at Windward Community College.)

She said he's made "an enormous leap toward recovery" since going to the hospital's treatment program.

Neuropsychologist Richard Kappenberg said Hawaii is "at a disadvantage" without the type of neuropsychology program offered at the State Hospital.

It has a large enough staff to accommodate a number of people who need comprehensive types of care and it can treat those without insurance -- "a really critical factor," Kappenberg said.

Many people with traumatic brain injuries are young and they have no financial resources or insurance, or their plan won't cover treatment, he said.

Kappenberg said there are several practitioners, including him, who do some cognitive rehabilitation work. But they can't offer the same services as the State Hospital without insurance or other payment, he said.

Such services could be offered outside the hospital, he said, "but it must be a dedicated program with a group of people to provide services and reimbursed by the state."